Rosa`s history
(August of 2005)

Anyone who reads this story can think freely whatever they wish. It was written to help Rosa, our daughter, get ahead.

There is no memory worse than the suffering of one's child. We view life with optimism, we try to be enthusiastic, confident, but the history of Rosa is always present.

We can't forgive ourselves one day, or even a minute that we lengthened the suffering of our daughter, for lack of knowledge or inability. But we also appreciate every second gained in favor of her happiness for all that we have learned to help her.

Forgive the extensive descriptions. They come from a mother who finds every detail of her daughter's life important.

Rosa Victoria was born July 10th of 2000 . Her sister Maria Emiliana was 3 years old then. We, Elke Franke (German) and Darinel Dominguez (Mexican), are her parents.

I, Elke, studied nursing and psychology in Germany . Darinel completed his studies in topography in Mexico . However, when our lives joined in 1995 we began to develop the socio-cultural project “Vientos Culturales” which provides art workshops and theatre to children and youth from marginalized zones in the state of Chiapas , Mexico . This was our work when I became pregnant with Rosa .

The birth of Maria was normal, without any problems for her or for me. But afterwards I suffered two miscarriages. Friends and family, trying to find reasons, concluded that it was because of the overload of work and the difficult conditions of my life.


With Rosa , the pregnancy was difficult, with sudden bleeding in the second and fourth months, an injury in the uterus and obligatory rest. At seven months my body had accumulated so much water that I had problems breathing and my internal organs hurt due to the water pressure. The doctors did not diagnose any anomaly in our little daughter, until the eighth month, when the doctor, after various ultrasounds, discovered that her intestine was blocked.


 



With Maria a few days before Rosa's birth


July 10, 2000

During the cesarean, as I was conscious, I heard the doctors say that my womb had excess water, so much so that it wet their feet. Rosa was born at eight o'clock at night and cried immediately, with a faint voice.

The nurses told me, Listen ma'am, your daughter was born without an anus . Yes , I answered. They insisted: But , did you hear correctly? She was born without an anus . Yes, I heard, I repeated to them.

Afterwards they took me to recuperation. The anesthesia kept my mind foggy and for hours I tried to concentrate, to understand the significance that my daughter was born without an anus.

Rosa was put in an incubator, in the neonatal section. She was kept on a fast so as to operate on her intestine the next day. Separated from my child, I spent the night in the same hospital.

A doctor visited me and told me not to worry, that Rosa had an anus, but it was very small. He told me he had tested it with a thermometer.

This small anus was going to prove to be one of the greatest problems in Rosa 's life.

July 11, 2000

With only two hours of life, Rosa was operated on for a pancreas anulare . The doctor assured me that it had gone well, but the baby had to stay fasting for 5 days. After the operation Rosa stayed in the neonatal area, in a normal crib. The unfortunate thing is that many of the nurses did not know that she was recently operated on and in comparison with the other premature baby's in the room, she was a big baby at 2 kilograms , so they did not pay much attention to her. Because of my recent cesarean, Darinel stayed to watch Rosa this day, but he did not feel confident of the nurses. He asked me to return immediately to the hospital.

July 12, 2000

I returned to the hospital, hugged Rosa and she felt very cold and pale. I tried to heat her with my own body but she started to cry and a lot of poop came out of her anus. As a consequence, she was transferred to the intensive care unit. Her life was in danger. Due to negligence, Rosa had become very cold. Starting this day we began to live in the hospital, sleeping on the stairs, always anxious about Rosa . My recent cesarean hurt, the wound was new and I had to cure myself in the hospital bathrooms.

July 13-15, 2000

In intensive care, Rosa quickly recuperated, but she always cried from hunger since they didn't feed her any more than the water infusions. Holding her and singing to her, she calmed down in our presence. July 15 she was returned to the crib area.

July 16, 2000

With grand hope, we started to give her breast milk by tube, but this same day Rosa began to look yellow and cold. They put her under the lamp. It was communicated to us that Rosa suffered from neonatal sepsis . She was isolated and her condition worsened quickly.

July 17, 2000

The baby's condition was grave. She forgot to breathe and her face was grey. The doctors wanted to put her on tubes. But we did not permit it because we had seen all the babies put on tubes die. This caused rumors among the paramedics who were not accustomed to deal with such “irrational” parents. The actual doctors were almost never around and if they were, they didn't bother themselves with dealing with parents.

Rosa continuously stopped her breathing. We stimulated her to breathe with pats to her body, which was already very flaccid, and we made her cry for hours. The doctors and nurses didn't come near us. The sea of tears made a miracle occur. In the afternoon a little color returned to her face and her condition improved.

July 18 to August 8, 2000

Rosa had survived but her breathing continued to stop constantly. We didn't remove our gaze from Rosa 's chest for two weeks, 24 hours a day, giving her pats when her breathing stopped. Darinel and I took turns.

All of a sudden a lot of babies started to die. The dead babies were wrapped in a hard, brown paper, the kind used to wrap tortillas in, and they were taken who knows where by a man or a nurse. All the parents who had children inside watched and knew what they carried in that paper. We had no idea if they were a few or a lot that died. The majority of us were in this situation for the first time.

All of this continued for several days until one night a relatively young doctor arrived who had been on vacation. He was furious, took out all the parents and started to review the babies, read papers and forms, and then called us to meet. He told us that without a doubt an epidemic was the cause of the deaths and the few babies who remained were almost surely going to die.

The honesty and braveness to say things how they are is a rare virtue in our Mexican culture. The pediatrician Jari Vasquez has this virtue. All the parents that were present thanked him profoundly for his sincerity. We felt relieved; even some laughs were heard after the news.

The epidemic was caused by bacteria that attacked the respiratory system. The hygiene conditions were lamentable. Most of the time the section was attended by paramedics and if we proposed taking Rosa to another hospital they scared us into staying, saying that she would die on the way and there was no better place for her to be.

Little by little Rosa 's condition improved. Around July 30 she began to drink breast milk by tube. She had been fasting almost 3 weeks, without intravenous nourishment except for balanced liquids.

The lack of resources in the hospitals of Chiapas does not allow this type of costly nourishment. The law is applied in the strictest sense. Those who survive are lucky. Thank God Rosa was strong; she possessed an enormous vital energy. During her stay she received two blood transfusions and a change of blood (exsanguino), in addition to numerous antibiotics (among them Imepenen).

For lack of patience and professionalism among the nurses and doctors, Rosa suffered hundreds of pricks in her skin, destroying all of her veins in the intent to insert the needle for the transfusions.

Afterwards, the neonatal section of the hospital was closed and fumigated. We don't know exactly how many newborns died- 20, 30 or 40- during our stay in the neonatal section of Regional Hospital of Tuxtla Gutierrez. We only know that it was a lot. Rosa was the only infected baby that survived and we never left her crib for 4 weeks.

 


August 8 she was released. During the whole time, no doctor bothered to tell us that Rosa 's face seemed strange and that it could be related to some syndrome. As parents we saw her as normal.

While still in the hospital we decided the name our small daughter would have: Rosa as a symbol of humility and a universal name, and Victoria for having overcome death. Rosa practically has victory written on her forehead since she was born with a red birthmark in the form of a “V”.

 

 



The first photos at home


At home Rosa slept and slept.
For the first time she was in a place without noise and too much light.



 

 

The first year of life (2000-2001)

Arriving home, Rosa slept a lot. She was very calm and almost never cried. We enjoyed the sun in the mornings and she drank only breast milk. We did not suspect a psychomotor delay or any genetic abnormality.

But Rosa suffered from Gastroesophageal Reflux . Also, she always arched her back backwards, so much so that it was difficult to hold and carry her. During this time we still didn't want to interpret these instances as convulsions. We were happy to have her at home. The recent traumas kept us blind and we wanted with all our heart to have left all the problems behind.

At three months, we received a visit from my mother who is a pediatrician. She heard for the first time a murmur in Rosa 's heart. The cardiologist diagnosed a large interauricular communication and he recommended we take her to Germany since in Mexico the waiting lists for heart operations are very long.



 


 

Stay in Germany

In the middle of October 2000 I traveled alone with Rosa to Germany . Rosa was four months old when she was hospitalized in “Charité”, a specialty hospital in Berlin . The interauricular communication diagnosis was confirmed at 2 cm . Since the legion was so big they recommended an operation. But at the same time a cytomegalovirus infection was diagnosed (probably acquired during the blood transfusions in Mexico ) and the operation was postponed.

Rosa stayed hospitalized for one month to receive many types of studies and tests. My daughter suffered much stress during the diagnostic studies. I felt very unsure. The doctors told me that Rosa 's face seemed like those of children with a syndrome of brain tumors which would grow and soon cause her death (I think it is called Pollister hall).

Then the geneticists arrived. I think there is not a more uncomfortable look than that of a geneticist registering in extreme detail the “abnormalities” of your daughter. “Ears very low”. “Doesn't have eyebrows”. The genetic study took a long time. Meanwhile the speculations continued.

I tried to always be friendly and patient. It was not the doctor's fault. They were doing what their conscious and acquired knowledge of many years told them was best.

Rosa 's small anus began to cause problems. The doctors decided to dilate her anus to see if it made her bowel movements easier and avoided an operation. The x-rays had seen her rectum grown in size. Throughout 3 months she attended 20 sessions to dilate her anus using gynecological “poles” (from 0.5 to 2.5 cm in diameter). These sessions were very painful and they caused the sides of her anus to tear in order to make the anus bigger. Today we know that the supposed anus was only a small fistula. Rosa began to have easier bowel movements but it continued to accumulate in her intestines.

I am sure that Rosa remembers these sessions, as I do, as one of our most horrible memories. During the dilations the nurse brought a musical doll. When Rosa was 3 years old my parents gave her a doll with the same melody. Every time Rosa heard the melody she became distraught crying. We got rid of the doll.

At 5 months, Rosa began to receive “Bobath” rehabilitation (half hour daily in an irregular form). We liked it, because the therapist was very nice. Certainly we began to like a lot of therapies for this reason, not so much because they helped Rosa considerably.

At the end of November she was released. Rosa received Bobath therapy twice a week and did exercises at home, so that she could learn to control her head and start to roll. Also, we slept and slept after so much stress. My parents took care of us during these months in their house and gave us all of their support. We also found refuge with my sister Uta, Liane, Saskia, Daniela and Öfter during our stay in Berlin .



 


Many friends helped us in
Berlin


At 6 months Rosa starts to fix her gaze on toys


The grandparents visiting in the hospital

 


In December of 2000 Darinel and Maria joined us in Germany . We were finally together. The geneticist called for a meeting to inform us of the results of the genetic study she did on the entire family. She informed us that Rosa had a partial Trisomy 14 which she carried from Darinel. (Kariotyp*: 46,XX,add (8) (p?23).ish der(8)t(8;14)(p23;q24)8vct14+,wcp8+) A lot of numbers for such a sweet girl like Rosa .

The geneticist explained to us that the piece of chromosome that Rosa has the most of is big, which means the prognosis is not good. She also warned us that Rosa could suffer from epilepsy. But she didn't want to give us more information that would cause us undue anxiety. This gave us a desperate smile. She also explained to us that the development of these children varied a lot so one couldn't make any predictions.

I have tried to learn more about children with partial Trisomy 14, but there is almost no information available. The geneticists in Berlin and those in National Pediatric Institute in Mexico City have never known a child with partial Trisomy 14 in their careers.

In another talk, a neurologist tells us that Rosa 's problem is very grave, especially for the combination of partial Trisomy 14 with neonatal sepsis and the cytomegalovirus infection.

At five months Rosa couldn't hold up her head but she had begun to fix her gaze on toys and sometimes lifted her hand to touch them.

On December 22, 2000 the interauricular communication is fixed with an open heart surgery. All seems normal. But three days afterwards Rosa begins to have a fever and high pressure. The fever is not controlled with medications and Rosa continues in this state for several days. The doctors take fluid from the spinal column and find again the cytomegalovirus infection. It had become active again causing encephalitis. Associated with the fever I observe on two occasions that Rosa extends her head backward and her muscles tighten. Her face becomes red. All of this lasts 3 seconds. It is the first time I suspect convulsions.

Little by little Rosa improves and at the end of January she is released. I remember that in February 2001 she learns to support her head and sometimes rotate it. She also sees and reacts to sounds. She loves to listen to music and she laughs with mom and dad.


With dad at last



New Year 2000/2001, with Maria in a break from the hospital


 

Return to Mexico

At the end of February 2001 all the family returns to Mexico . Rosa is almost 8 months old. She spends a lot of time on the floor. She can now roll; she sleeps a lot and is calm. Until July 2001 she consumes only breast milk. Afterwards she begins to drink Nido milk (powdered milk) and mashed up chicken with vegetables, etc.

Rosa eats well but suffers from constipation. Sometimes her anus bleeds and a small ulcer begins to form in the area. A dermatologist says she will get better little by little, especially when she no longer wears a diaper. To this day, at 5 years old, she still wears a diaper.


Beginning at 8 months we begin to attend therapy (two times a week, one hour of movement) with a private doctor. The sessions are expensive. And even though we continue them at home, we feel we have not made a lot of progress.

For a year we pay the therapy sessions until I realized that the doctor had more psychological ability with the parents than therapeutic ability with our daughter. I have known many private doctors who work in this same doubtful capacity. The sessions really didn't have any significance for Rosa and consisted of electric stimulations and leg and arm movement.

 



At home we had the most fun with the ball


Since we live in the space where we work, Rosa was in constant contact with other children, and spent much time being hugged, perceiving music, colors and all type of stimulus. She came with us whenever we left the house, health permitting. We believe this environment has been absolutely positive for Rosa in comparison with the life she could have lead closed up in an apartment.



The second year of life (2001-2002)

From 8 to 15 months Rosa has many serious illnesses: diarrhea and respiratory problems (asthma). She vomits a lot. Rosa is seriously sick more than two weeks of every month. She is constantly on antibiotics, inhalers, etc. Her defenses are very low. Consultations and medications are expensive and each time destroy her health more.


Late night trips to the hospital and searches for doctors turn our family life upside down in such a way that we live in constant anxiety. Maria, Rosa's sister, lacks the attention she needs. And we never had the time to think about Rosa's future.

 



Rosa sick at home. We no longer take her always to the hospital.


The situation improves a little by October. Rosa can now move a little bit more and has become a bit restless. When she turns one she can remain seated when we put her in this position, she rolls and no longer arches backwards. We start to breathe again.

But the next catastrophe arrives soon. In November of 2001 Rosa breaks her right leg ( right femur fracture). Playing, she had wanted to get down from my lap. Her little leg turned and broke. The accident was not clear. Since she had pulled her arm to keep from falling, first we suspected the clavicle. The doctor in the Red Cross did not examine her well, and sent her home with a neck brace . We returned at midnight realizing that the problem was her leg.

Rosa suffered greatly because she waited almost 20 hours crying in pain until they set her leg in the correct position and plastered it. The process was realized under anesthesia. This anesthesia, we suppose, was very bad because it bothered Rosa a lot. And her leg was set incorrectly, slowly turned inward.

Rosa had a plaster cast covering her from waist down for 3 months. After the accident she was in a state of shock for one or two weeks. She was very serious and didn't laugh. We also entered in a state of shock. We felt something had broken in us as well. Sadness invaded us and enthusiasm abandoned us. During this time my heart felt like a tight knot.

I realized that Rosa's future was destined to suffer from negligent doctors and I started to warn every new doctor that crossed our path that Rosa was special. They looked at me with distrust but in general they gave us more attention. I also began to see my daughter in a different way. I began to see that Rosa taught something to every person that crossed her path. She paid these lessons with her suffering. But the people learned.



Immediately after the accident, Rosa began to have convulsions. She slept, but after 10 minutes she awoke scared and crying and her body was tense. We took her to a neurologist who prescribed a dose of 75mg Phenobarbital in the evenings.

The situation improved and this type of convulsion didn't return. But since she began taking the medication Rosa began to suffer from small convulsions that made her eyelids flutter, change her facial expression, clench her hands, and sometimes cry. These episodes lasted 5 to 30 seconds and appeared more when she had a fever, was exposed to wind or rain, or when we touched her face. The convulsions could present themselves once a week or several times a day. To this day I think the secondary effects of the Phenobarbital sedation and the consequential lack of oxygen to the brain were the causes.

I started to insist that the medication be suspended. But the neurologists rejected my theory. To the contrary, one of them recommended we continue the medication until Rosa was at least four years old, and he scared us into thinking that if we discontinued the treatment we would put her life at risk.

The idea that the medication affected her ability to learn made us worried and uncomfortable. Rosa became more apathetic, she didn't respond to her name and the illnesses returned.

Unfortunately, no doctor, for all his or her knowledge and sensibility, has the time to observe my daughter like I do and they will never break the chord that unites she and I. The umbilical chord is cut physically but never spiritually. I have always known, if the door is open or closed, if my daughter is asleep or awake; if she is hungry, or hurts; if she is content, mad, or impatient; if she sees or doesn't see, hears or doesn't hear, feels or doesn't feel, understands or doesn't understand. I ask other mothers and all feel the same. Unfortunately, of the approximately 500 doctors I have known, a small part of me has wanted to take into account this maternal instinct.


Alter 3 months of immobility with her two legs in a cast, Rosa had lost all muscular strength. During a serious diarrhea illness, we decided to cut the cast. The little leg had healed, but it was twisted. After this farce I wanted a change for Rosa . We started to check out different daycares looking for one where I could involve my daughter in new experiences and spend time with other children. I felt tired and desperate.

 

 




In March of 2002 Rosa began to attend a day care center for children with special needs. First she only went to do therapy which I did with her and starting in May, she entered the day care area.

Every day she was attended to by a teacher, in a group of 3 children. Rosa received daily physical therapy (approx. a half hour), sensory perception therapy and learning. She was also put in a contraption to help her learn to stand for a half hour daily.

From the beginning I insisted on doing the therapies myself with Rosa , but the teacher stopped me, declaring that it was her job. The teacher Lulu was a very patient person, always attentive to the children and very dedicated to her job. We all remember her with affection.

The power to pass a few hours without Rosa helped me gain back strength and I also began to give more attention to Maria who had passed the last two years in a vegetative state. Maria was very inhibited and a little behind for her age. I looked for an excellent day care for her, where she found in her teachers Ema, Lupita and her new companions a world of new experiences.

But Rosa continued with health problems.

Third year of life (2002-2003)

Beginning in July of 2002 there was an important improvement. Rosa started a homeopathic treatment at home and stopped taking antibiotics. She also changed to non-lactose milk which immediately stopped the constant diarrhea. I am very thankful for the support of homeopath Santiago Borraz during this stage of Rosa 's life.

I started to strictly exclude the use of antibiotics and cortisone. Sometimes Rosa suffered because her illnesses and periods of asthma lengthened/grew. But we were compensated. Her health became a little more stable and sometimes passed one or two months without an illness. But Rosa was not sensitive; she had no tactile sense. She didn't respond to caresses and didn't laugh with tickles like other children. She didn't understand words and didn't react when we called her by name. Since her 8 th month of life until she turned 3 Rosa didn't have any significant advance in her mobility. She could roll and sit. She could not drag herself, crawl, walk; she couldn't see or talk well, or even babble.

Perhaps all of this would not have been so difficult for us if it had not been for the always present illnesses that put her life in danger. “If only she were healthy; hopefully she doesn't get sick” we told ourselves. Illness meant pain and suffering for her.

The ulcer in Rosa 's anus did not heal and little by little it became bigger. She now had more constipation problems. For this we began to attend consultations in the National Pediatric Institute in Mexico City , 1000 kilometers from Tuxtla Gtz. In the state of Chiapas there are no proctology pediatricians. The doctor specialist explained to us that Rosa had an anorectal fistula and recommended an operation to reconstruct her anus in the correct place which would alleviate Rosa 's digestive problems. Due to the long waiting lists the operation is scheduled for August of 2003.




Rosa is an enchanting child. She always gives a smile to whoever deserves it, and whoever receives it feels like a fortunate person. She is also a specialist in distinguishing emotional states of people. She is our heart meter , our red alert in this sense. With any kind of emotional tension she begins to cry. Sometimes we began to judge the people who visited Vientos Culturales in accordance with Rosa 's reaction. If she doesn't cry, all is well; if she cries it means the visitor brings some guarded tension.

Rosa happily attended the day care center and for her friendly character she was much loved. I think in general it was a good year for Rosa . She had fun in the company of the other children and became famous for her welcoming smile. We also had contact with other parents and attended the events organized by the center.

From Vientos Culturales to the day care center was a long way and we spent a lot of time driving. At the beginning of February 2003 we had a car accident, hit from the front. Rosa rolled forwards and fell on the floor of the truck and hit the right side of her face. The revision in pediatric trauma and different x-ray studies didn't show any pathological consequence. The hematoma in her face took two weeks to disappear.

I leave with a scare and an injury on my own face. I began to realize I was overloaded. I tried to attend to my job, Rosa, Maria, and I wanted to show the world that I could do it all myself. Unfortunately I felt bad asking for support, because sometimes I had been rejected and for that reason I believed it was my obligation to attend to my problems by myself.

very day when I picked up Rosa from the daycare I asked the teacher if she had done the therapies. Too many times the answer was “No”. For that reason, starting in February of 2003, I decided to do the therapies myself.

We did a two hour program from Monday to Friday (Mobility, ball, massage, sensory perception, songs, a little crawling with help, etc.)

Rosa seemed more content, she didn't have as many convulsions, slept better and in a few occasions said ma ma ma.




In May of 2003 the most important event in Rosa 's life since her birth occurs. The teacher Emma from Maria's kindergarten had observed Rosa and told me that her niece Gimena had been in a program in Philadelphia , United States which had helped her a lot. And she also insisted I read a book she had.

I really didn't pay much attention to Emma. I was tired of all the different therapies which only turned out to be business for the doctors, with little improvement in the children. And Philadelphia seemed incredibly far away for the economic situation we were in.

The teacher Emma noticed my indifference and decided to buy me the book, What To Do About Your Brain-Injured Child , and she put it in my hands as a present. I don't have words to describe my thanks to her. Her simple gift opened an unknown world full of hope. Thanks to this simple act of kindness Rosa has been able to discover how it feels to crawl, walk, read and communicate. We, her family, are experiencing every day the satisfaction of participating in her newfound happiness.

I started to read the book and as I read I told myself, “Of course, how logical, why didn't I understand before?” The author Glenn Doman is founder of the Institute for Human Potential and for more than 50 years has rejected doing things that don't work with the children with cerebral lesion, dedicating all his life to discovering new methods that help them improve and become healthy. The book was written for the parents of these children and the most wonderful thing is that it has taught us how to help our children.

I totally agreed not to do things with Rosa that didn't work and disposed in doing things all day long that helped her. I was also in agreement with Glenn Doman that we as parents, and especially me as mother, were the answer to our children's problems. After having known 500 doctors who didn't consider my knowledge of my daughter important, I had finally found a group of people who thought the opposite.

During this time Maria was already in elementary school and since entering the school I had begun to reason about two things.

•  Why does a healthy girl have to spend 7 hours daily with special attention to be able to learn and become an active member of society, and my child with cerebral lesion supposedly will improve and reach this goal with half an hour of physical therapy daily? Shouldn't I at least dedicate the same amount of time to her education?

•  The most paradoxical thing is that even with the attention Maria received in school, the most important things were taught to her parents. With us she has learned easily and happily. After half a school year Maria could not read. I began to worry and together we learned the game of reading. We played at this for half an hour daily. Alter two weeks she could read. This has been repeated with many things, especially with math. And Maria fully enjoyed learning with her mother and father. We were the best teachers for our daughter .

There are many people trained to teach kids like Maria. But no doctor, therapist or teacher has lived 5 years of her life with a girl , her sister, who has partial Trisomy 14; who was born with an anular pancreas, an Interauricular Communication and an anorectal fistula; who suffered a neonatal Sepsis and Encephalitis by Cytomegalovirus, a fracture of the right femur; who has epilepsy and frequent illnesses of all types due to her weak defenses; who has received 9 anesthesia and uncountable x-rays and who lives in a subtropical climate of Tuxtla Gutierrez, in an open air adobe house. There are only three people: her mother, father and herself.

And I had just discovered the Institute for the Achievement of Human Potential which has dedicated 50 years to the study of thousands of children like Rosa , discovering methods to help them. And the most important is that the put all their knowledge in the hands o f the parents, because they know that we can be the best teachers to our children when we know the appropriate methods.

The treatments described convinced me by their logic and simple philosophy based on love and perseverance. Also, to the date I had never heard of a girl like Rosa, who had gotten better or had significant improvements. Consulting the web page of Institute for the Achievement of Human Potential and reading numerous testimonies, I was convinced.

Philadelphia was out of our reach. We only had the book What To Do About Your Brain-Injured Child , in our hands. The teacher Emma put me in contact with her sister Leonor, from Leon, Guanajuato, who had been in the treatment with her daughter Gimena for 7 years. I appreciate the support of Leonora. I never had the chance to meet her personally, but she has accepted my phone call many times to clarify doubts and she helped me design the first program at home with Rosa .

It was May. The Institute gives a course once a year, in May, directed to parents in the city of Aguascalientes, Mexico . We suffered from serious financial problems and were not sure how to ask for help from others. So we postponed our trip to Aguascalientes for one year.

Our constant financial problems are not based on our disability, but on Vientos Culturales, the socio-cultural project we direct. It is not a lucrative project and it generates innumerable expenses that we must solve creatively, especially during times when we do not receive any government or other type of support. We have not abandoned the project; we have lost ourselves within it more than ever and are convinced that it has been a good decision.

In these difficult times I have always had the support of my parents, whether it be morally or economically. During the few weeks of their annual visit, my mother washes clothes, cleans the kitchen and my father tries to fix the faucets that drip or change the roof tiles.

In June I reread What To Do About Your Brain-Injured Child in detail, spoke many times to Leonor and after finishing some projects for work I was ready to start.


The cross patterning program



Fourth year of life (2003-2004)

Rosa 's birthday present was the start of her program with the Institute. To start with, we quit the day care center. Rosa was now at home with us again. During the first months we did a program of 2 hours daily, the same amount of time she had dedicated to the therapies they taught me in the daycare center. I wanted to be sure of the differences in the effects of the treatment. I am a reasonable person and I wasn't going to trust only what was written in a book without having seen results.

We started with cross patterning, tactile massages, and ropes. Rosa could not crawl; she couldn't even keep herself in this position. But I held her in position and pushed her arms and legs in a cross pattern so that she would learn. We also made the first changes to her diet, taking out milk completely.

The positive affects were almost immediate. Rosa started to wake up intellectually; she started to babble and did so as if she were talking with us. She started to chew her food; her arms gained strength, climbed stairs and could pull herself up from the chair to the table.

In August of 2003 we traveled to Mexico for the planned operation for the anorectoplasty. The program was interrupted.

First they did a colostomy and it was for us the beginning of the year of poop . Rosa was having bowel movements in a plastic bag attached to her stomach waiting for her rectum to recuperate its normal size and elasticity. Even with the annoyances that the colostomy brought, the operation was a blessing for Rosa who had accumulated old poop in her stomach for years. The toxins had debilitated her organs. Without this weight, Rosa became more animated and restless.

The colostomy bags were very expensive, they irritated the skin and the poop came out continuously. I became a specialist in colostomy attention and invented an ingenious method of recycling the bags, strengthening them and using an elastic belt. With the help of our friend Lupita we bought a few bags that we washed and reused. I think, from washing so much poop, I have become more sensitive. I have always believed that the secrets in life are found in the simplest activities.

Even with all of this we continued the program. During this time foreign volunteers, who helped in Vientos Culturales, lived with us and shared our small and big worries.

We fondly remember Elio from Italy who was one of the pioneers in cross patterning and made the first table for Rosa . All of my companions from Vientos Culturales, especially David and Gilberto, were cross patterning volunteers for a long time. I appreciate their patience.

Jense lived with us for one year, specifically the year of poop, sharing all of Rosa 's problems, fears and successes, helping from Monday to Sunday with the therapies. Now he is in Belgium . He is an extraordinary person. We appreciate all the love he gave to Rosa.

Also Sofie from Canada , Rebecca and Rita from Switzerland , Elisa from Italy , Kari from Finland , Betina from Denmark and now Bobby from England . We will never forget your support.

In September of 2003 Rosa starts to crawl. It was her first big victory. To see that she had achieved in 3 months what she hadn't in 3 years, I was totally convinced. I think Rosa never had such rapid advances as in the first 3 months of treatment. I viewed it with such happiness that it was contagious.


Rosa with Elio



Rosa with Jense

Excited for our successes we started the des-intoxication of the Phenobarbital. Of course without the authorization of the neurologist. With every milligram that we reduced Rosa 's dosage, she had trouble falling asleep and screamed at night.

I didn't have the advice of any doctor about the des-intoxication and I did it slowly, for half a year, reducing the dosage every two weeks by a few milligrams. It was how I learned to reduce the tablets into powder and give it out in 20 parts.

In March of 2004 we finished the des-intoxication and the convulsions disappeared. Rosa 's state of health had improved a lot. Her health was robust and hadn't become sick in 6 months.

In March of 2004 we returned to Mexico City for the anorectoplasty done by Dr. Luis de la Torre. I have a lot of respect for this doctor because he is a true specialist in his area and an excellent human being. Even though he is in a public hospital, every patient is special and of great importance to him and he was always within our reach even if it was Sunday or a holiday. I also appreciate his nurse Lupita for the patience she had with me, in my desperate calls during Easter of 2004. What I don't forgive is the long waiting list.

I also appreciate the support we received during our long stays in Mexico City in the Ronald McDonald shelter, where they gave us protection, food and a roof. I remember with affection the other mothers who attended this shelter. I learned a lot in this place.

In April of 2004 Rosa began to walk with one hand. Her abilities and intelligence increased rapidly. She could now stand up, with the help of furniture, and begin to explore the house by herself.

Alter the operation, Rosa still continued with the colostomy and we started to visualize our attendance at the Institutes in Aguascalientes in 2004. I still felt bad asking for economic help and we had to present a theatre project to pay the costs, a challenge that we perhaps would not have accepted under different circumstances.

Another problem was that Rosa could not accompany us to the course which was to last one week. Who would take care of her? We had never left her alone. My parents, like so many times before, helped and planned their vacation in a way that they could help with the girls during our trip.

The work that my mother carried out, as a pediatrician, and my father as an engineer in Germany was exhausting but even so, they decided to dedicate their little vacation time to the complicated care of their granddaughters, sleeping on the floor of our humble room surrounded by people who didn't speak their language.

In Aguascalientes we found much more than we had expected. The conferences were well planned, and the best of all is that there were the people of the Institute in flesh and blood. During the breaks they answered our questions and gave us a great amount of valuable information about physical, intellectual and physiological development of our daughter.

We felt fortunate to have met these people, who came from so far and practiced a life philosophy based on unconditional service, work and respect for children with cerebral lesions.

Returning from Aguascalientes we were prepared to evaluate Rosa and design a program specifically for her. We started immediately and Rosa 's program expanded more and more. These first months were crazy. The crawling, among other activities, was the most important activity during this time. We increased the distances daily until arriving at 1300 meters a day, even though we didn't have an adequate space and we crawled in the hallway of the house on a cement floor. We crawled with the cat, the dog, with toys and puppets; we used food; even a horse served as a motivation so that Rosa would crawl the 20 m hall from one end to the other. Of course I crawled it all with her. Never again in my life will I p ton a mini-skirt. My knees are marked forever just like Rosa's; I also benefited from the positive effects of the treatment. My ability to solve problems and also to learn languages have increased considerable.

In June we returned to Mexico City for a dental reconstruction. The mothers and other acquaintances in the Ronal McDonald shelter were surprised at the advances Rosa had made in only a few months. We did not interrupt the program, continuing the crawling in the hallways of the shelter. All of the patients participated. “How much more?” they asked, “Did you reach your goal?” Many people got down on the floor with Rosa . We had a lot of fun.


Forward rolls




For the first time in her life, Rosa can transport herself.



On a trip to Lagos de Colon


Fifth year of life (2004-2005)

In August of 2004 Rosa was reconnected and we were liberated from the poop bags. Finally she began to have bowel movements through her anus. All went well, but her bowel movements were frequent and not always regular. Also, the doctor told me that after 3 openings of the abdomen, it was stuck together in many places, and the musculature was very weak. Rosa 's digestive problems are still a subject that lacks much to conclude/finish.

Rosa's program had become one of intensive treatment before arriving in Philadelphia . The program of nutrition, vitamins, and liquid balance established Rosa 's health for the better. We started the reading and lecture program with large red words on a white background and Rosa started to understand words, phrases and complete sentences.

Now Rosa laughs from tickling and can differentiate hot and cold. She also enjoys immensely the attention she receives during the day. What child wouldn't want their mother by their side all day helping them realize different activities like crawling, and walking up inclines, etc. The cross patterning was the only thing that Rosa didn't like during this time, but we surpassed her distaste.

In October of 2004 something happened that we had been waiting a long time for. Rosa let go of the hand and walked by her self, crossing the room various times, and with much enthusiasm, following a tricycle that had caught her attention. The whole family was present. It was a huge joy. Maria remembers this day because I gave her an ice cream.

Until Christmas it was exhausting. I had proposed too much for myself. The vibe was contagious. If mom is exhausted, so is Rosa . If mom is happy, so is Rosa . I started to invite friends over to help, and also to tell us a little of the outside world and they warmed our hearts. We managed to survive like this until the end of December. Our first visit to Philadelphia was a desired event we were waiting for.

In December of 2004 the news arrived. Rosa had an appointment for January 3. We traveled December 31. In Mexico City we missed our flight and the agency gave us a room in a fancy hotel as compensation. This is how we passed New Year's Eve, enjoying delicious food and sleeping in super comfortable beds. The compensation for extraordinary effort when least expected.

We arrived in Philadelphia January 1. We were finally in the place we had dreamed about for almost 2 years. We met a lot of staff of the Institute in the two days we were there. They are all extraordinary people.

They were two long days. The appointment for aspiring candidates only lasts two days, and in a period of half a year that follows the appointment, the family decided if they will apply the intensive treatment program which lasts for at least 2 years.

The first day was dedicated entirely o an evaluation of Rosa , from 8 in the morning to 10 at night. No one had ever taken more than a half hour to evaluate Rosa and here were people who took an entire day to define if Rosa was or wasn't a child with cerebral lesion; what type of lesion; how deep was it and how many advances had she had with our at home program. Rosa was evaluated physically, intellectually, and physiologically.

In whatever hospital or clinic we had entered before, the doctors always saw a problem enter and normally not one resisted in taking advantage of us in some way.

The staff of the Institutes did not see Rosa as a treat and did not take advantage of us. At the end of the day Miki Nakayachi told us the result of the evaluation.

When Rosa started the program in July of 2003, she was 36.2 months old, her neurological age was 3.5 months with a growth rate of only 10%, which corresponds to a profound lesion, diffuse and bilateral, that compromised her cortex and middle brain.

In the 17.7 months of treatment at home Rosa had grown 17.04 months neurologically. This was a growth rate of 96.2% of normal. This meant that she had grown almost 10 times faster than before starting the program. The actual growth rate, comparing her chronological and neurological age, was 36%, a severe lesion that probably only compromised the middle brain.

We were all happy with Rosa 's advances.

The second day was dedicated to teaching us the new program that was now designed specifically for Rosa . From Leya we received the exact indications and goals for the physical program. Teruki taught us the reading program and sensory stimulation. Ann Ball taught us the use of respiratory masks and the cross patterning. Doctor Thompson designer the diet plan, which excluded all allergic elements and provided the exact quantities of water, proteins, carbohydrates and greases that Rosa was to consume daily. It also indicated vitamins and supplements to improve Rosa 's defenses.

t the end of this grand day, Rosalind Klein Doman communicated to us the rules of intensive treatment. The program is to be done completely, every day without exception. A parent should always be present during the program, both should attend the appointments, and they must communicate with the tutor, send reports every two months, analyses, films, etc.




Leya teaches us the new physical program of
Rosa



Evaluation day with Leya, Dr. Morales and translator Giselle


Rosa plays during the recording of her history


Dr. Thomson explaining Rosa's new nutrition progam.

The nest day, at 5 am we returned to Mexico . We obviously returned home with much enthusiasm. We built a special space for Rosa that measured 30 m square, so that we could carry out the program finally on carpet, and we started immediately.

I felt very relieved, because I was no longer guessing if my program was the correct one, too short or too grand. I felt more confident because I had in my hands the perfect program for Rosa . I also started to look for more help and many friend helped in the therapy. Tiziana, Fernando, Meche, Betty, Erica, Aldo, Liliana, Luz, Marta, Sara and Pedro. Many thanks to all. In January Sara arrived and now forms part of the Vientos Culturales team. I have been able to pass on a lot of work to her and I appreciate her translation of this history into English.

During this time we have had the support of Nati Meyers, our tutor from the Institutes. We can communicate our doubts and Nati helps us answer questions and solve problems that arise during the program. Every two months we send an extensive report to Philadelphia , accompanied by a video. The staff carefully review these reports and Nati communicates with us to update the program.

In February, Rosa learned to stand up by herself and her walking improved considerable. She also spontaneously started to say agua, mama and babá (dad). It's curious what objects attract her attention. She wants to sweep, mop, wash dishes, hammer nails, cut vegetables and cut with scissors. Her manual ability still impedes her, but she is constantly improving.

We now observe our daughter and are convinced that she has no problem understanding what is happening around her. What surprises us is that she shows special interest in sophisticated subjects that I show her through her reading program: geography, the animal world, customs from other cultures, history, etc. Rosa cries for her printed word signs and books, her passion is so great for them. She also loves theatre, dance, and of course puppets. A month ago we took the girls to a contemporary dance performance in the Theatre of the City and Rosa breathed with excitement. Lately we have also woken up interest in the movies and if we finish the program early on Sundays, and our budget allows it, the whole family goes to the movies.

In May of 2005 Rosa received an invitation to Aguascalientes from the Institutes to do a demonstration during the same course we had attended the year before. There we were again in the same conference room, but with the opportunity to help other parents. One week before the trip I began to explain to Rosa , through her reading program, that she was going to have the opportunity to teach other parents how to help their children. Whenever I want to make sure that Rosa understands something I tell it to her through writing. Rosa understood and was excited.

The demonstration was a success. Rosa was happy. We taught other parents how to crawl at home, how we walked under the overhead ladder . In the demonstration Rosa insisted in doing the ladder alone, something she had never done at home. She also demonstrate that she could walk by herself and shared some of her books that dad had painted for her. Rosa, a small girl of 4 years old, with cerebral lesion, understood perfectly why she was in this conference room and to whom she was demonstrating her victories. It was like a dream. We took advantage of the occasion to update Rosa's program thanks to the help of Douglas, Olivia and Dr. Green, and we attended the second conference to learn more about new programs for Rosa .

Rosa has now started her walking program and we head quickly towards the second victory: running. She also has an intensive rolling program to stimulate her vestibular system. We do 300 different ropes and rolls daily. We have forgotten about illnesses. Not only has Rosa 's health improved, but mine as well. With so much exercise I feel good. Rosa 's digestion still worries us. Her bowel movements are still not regular, but we hope to find new solutions in our next visit to Philadelphia .

We have a strict schedule. Especially me, the mom. I am enjoying the schedule a lot. I have a scattered character and the schedule has helped me in many ways to organize my life in a better way. A normal day of intensive treatment begins at 7 am and ends at 7 pm. I also help with the activities of Vientos Culturales, where my presence is indispensable. I act in the puppet shows, collect funding and create new projects. When my departure is necessary and Darinel can't stay to do the program, my sister-in-law Maggi comes to save the day. The occasions are few but we don't know what we would do without her help.






Rosa with her respiratory masks


The reading program


Rosa likes to do her walking sessions with an apple

Someone is bound to ask, what about Maria, with all this attention focused on Rosa . Before starting the program with Rosa , Maria was an inhibited girl, who communicated very little with her friends and liked to isolate herself. She has always showed an intense love and affection for her sister. She does not show jealousy and when we started the program she quickly became involved in the activities and became my afternoon volunteer. The strict schedule allows me to give more attention towards Maria.

With the techniques learned in the Institute I started a German language program with Maria. German for her is a strange language. In 3 months Maria learned much more German than she had learned English in 3 years at school, 2 hours daily. Much to my surprise, she never rejected the German sessions and if for some reason it was interrupted, she asked for it.

She enjoys the small responsibilities she has now like washing clothes, watering her radish garden, studying and reading. She also involves herself in the physical program. Together with her dad, she crawls 800 m daily. She has her small program just like here sister and I think she is receiving more attention than some other children who don't have sibling with cerebral lesion. She has become much happier, confident and she has many friends among the children who come to Vientos Culturales. And it's not any kid that has the luxury of living in a Cultural Center and can assist daily art workshops.












María 2 years ago before the start of Rosa's program


María today

 

Darinel is present at every moment. Even though I am the person who does most of the program, I could never do it without his love and support.

We are a normal family in the sense that we love our daughters, but we are not common in our way of showing our love. Thank god we don't have television. Two years ago it was robbed and I am thankful to the thief who took it. We didn't watch it much, but now that it isn't here, our family is at peace.

Sometimes we want things, but knowing why, we never buy them. We don't have money in the bank like others; Darinel lives by what his family fives him, Maria and Rosa by what their grandparents send from Germany . I can't wash my clothes. My mother-in-law as helped with this for years. Rosa never wears socks of the same color because I never have time to put in order the clean clothes. I don't have sandals; I use the ones Hiram gave me which are 3 sizes too big. When will I have time to go the market and buy some new ones?

After 10 years of marriage we still sleep on comforters on the floor and the only new furniture we have acquired is a used refrigerator, that we owe money on still. We can't eat the food we always get the urge for, because we don't have the time to buy it or prepare it.

But we have had time, like never before, to be together. Sundays are precious, because this day we do the program together between the 4 of us. We have had thousands of unforgettable moments together as a family, helping Rosa as well as ourselves to be better people, and happier.

If after reading this you think, They are crazy , maybe it will calm you to know that you are not the only one to think like that. There are people who avoid us. We understand very well.

But there are many people who have helped us and we understand them well. To help is wonderful. Rosa needs help and in this sense has changed profoundly the lives of many.

The appointments in Philadelphia are very expensive. The Institute for the Achievement of Human Potential is a non-lucrative organization. But we, as foreigners who don't receive any government support, just like many other parents, have to cover the costs, which for its quality of service, is high. We also have to cover the costs of the trip and lodging. My parents paid for the first appointment, but paying for others is beyond their means.

Now that we are a family accepted in the intensive treatment program, our appointments will be 5 days.

Monday: Evaluation

Tuesday and Wednesday: Conferences

Thursday and Friday: Learn Rosa 's new program

Contact is not interrupted alter the appointment. We receive attention at home through our Spanish translator, who revises our reports and videos and advises us at all times.

If you also think that to help is wonderful, support us in one of the following ways.

All is possible thanks to your help and thanks to our parents Edith and Eberhard Holz and Gloria Culebro, who made us strong people, able to overcome all obstacles. Thanks also to Maria for her patience and comprehension.




Elke Franke, mother of Rosa and Darinel Domínguez, father of Rosa.
(Tuxtla Gutiérrez, Chiapas, August of 2005)

Thanks to Sara Mc Grath for translating this text and thanks to Silvia Ramírez for teaching me how to design web pages.

We dedicate this page to Silvia, not as a web page designer,
but as a mom.

Web site for the Institute for the Achievement of Human Potential
www.iahp.org

Sitio Web of Vientos Culturales A.C.
www.vientosculturales.org

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