Dx Trisomy 21: Ana Sofia Story As Told By Mother
One mother takes the road less taken and finds it does make all the difference
When you notice something unusual about your newborn what do you do? Ana Sofia’s mother realized her daughter had slightly flattened facial features and poor muscle tone.
“It was as if I had been told that my daughter had just died.”
Then her doctor has told her that Ana Sofia had Trisomy 21.
Reflecting on her feelings, mother says: “At that moment I stopped listening to what the doctor was saying and started repeating many times what he had just said.”
“It was as if I had been told that my daughter had just died. All the illusions, all the dreams and hopes that I had for my daughter had died. I just did not understand what was happening, I felt a lot of anger, a lot of fear, a lot of frustration, a lot of shame, a lot of guilt, what had I done wrong. Why? Why?”
Trisomy 21 is the most common chromosomal abnormality seen in our children. It occurs in approximately one of 700 babies in the United States. It is usually caused by an error in cell division resulting in three copies of chromosome 21 instead of a pair. It is nearly 100% accurately diagnosed with serum screening tests.
“I would not lose this battle, but I didn’t know how to start or what path I could follow.”
Mother remembers, “When I finally got out of shock, I asked what would be the next step to create an opportunity for my new Ana Sofia, a child born with a genetic difference. After she was checked by many specialists, doctors, studies, and analyses, which did not provide us with any answer, I decided to make my daughter an independent woman; my Ana Sofia was been newly re-born at that moment. I was full of fears and tried more than once to look online and found the word “retarded”. However, I never looked again on the Internet. I was sure I would not lose this battle, but I didn’t know how to start or what path I could follow.”
Mother was lucky a lot of doctors gave her hope and thanks to them, she did not give up. Her path ultimately lead to The Institutes.
“Now is the time to surround yourself with success stories.”
It happened that Mother’s aunt studied education and wrote her thesis about Glenn Doman. The day before Ana Sofia was discharged from the hospital, her Aunt came to visit and took her out for lunch. Mother did not feel like going out, but she thought it was the only way to get for her aunt to see her daughter in the hospital.
On that day, mother received “the best present in the world”, the book What To Do about Your Brain-Injured Child. Her Aunt advised her: “You should not fall apart by reading or watching tragedy, or learning failed cases. Now is the time to surround yourself with success stories.”
She then told mother four success stories of children on The Institutes program.
Mother recalls “I thought I have to be surrounded by success. And every time I was feeling defeated, I just started reading marvelous stories on The Institutes website, about kids speaking three or four languages and others who had earned a college degree which gave me hope and strength to keep going.”
“The Course: It was hard but I did not want it to end now I had the tools, I was ready to start”
She attended The What To Do About Your Brian-Injured Child course when Ana Sofia was 6 months old “It was a hard course, but it was amazing. It was full of so much knowledge. I didn’t want it to end. I needed more time to keep on learning. I was discovering a new world. The words were easy to understand, there weren’t many medical terms, mostly just ones with human quality, about a program so much beneficial for my daughter. Most of my fears faded away. There is hope; I finally have the tools and I am ready and anxious to start my program using the information.”
The best thing Mother obtained from the course was summarized in two words – love and hope.
Stimulation and Opportunity
After attending the course Ana Sofia’s mother went home and did a careful evaluation based upon what they had learned. That evaluation showed that Ana Sofia was developing at about 80% of her peers. Her biggest problems were mobility and speech.
At her initial neurological evaluation at 7 months when she had her first visit to The Institutes Ana Sofia already had surpassed her peers in her overall neurological development. She was equal to or above her peers in all areas except mobility. She had just begun to creep independently at that time.
After eight months of home program Ana’s understanding was well above her peers and she was beginning to talk
Ana Sofia and mother worked together at home using the program designed by the staff of The Institutes for the next 8 months. When she was 20 months old Ana Sofia was developmentally 4 months ahead of her peers. She was reading large print books at a 7-year-old level. Her understanding was well above her peers. She is beginning to talk – she uses at least 20 words and some couplets and phrases to express herself now. She is just beginning to take independent steps after creeping the 400 meters in a day.
Mother believes “there is no limit preventing her from accomplishing what she wants.”
Mother now feels the future is bright for Ana Sofia: “The program has given me new expectations for Ana Sofia. She is capable of obtaining everything she wants and there is no limit preventing her from accomplishing what she wants.”
“Her future today is radiant.”
“She can earn a college degree if she wants. Her future is a choice among a thousand possibilities. And she is capable of choosing any of them. Before the program, there was none of them available for her; before there was only fear and uncertainty.”
“She is a confident girl with amazing abilities. I’m the proudest mother on earth and the happiest. My daughter teaches me more and more daily. She shows me that there is no reason to be afraid, and more importantly, she guides me to be a better person every day.”
“I decided to give the program a chance, and it has worked for us.”
Mother advises parents who have a brain injured-child: “You are not alone. Don’t give up. There is hope. The road is harder than you can imagine. Every day is hard. But with every little achievement from your kid, from Ana Sofia, no matter how little it is, I can see it and value it like the most wonderful treasure. When my aunt told me that “This program is for 26 hours a day”, I didn’t believe it. But now, I agree with it.
It takes 28 hours a day, but it is worth it. Every tear brings us a joy. Never listen to negative people. There are hundreds of them telling you that there is a better way of doing it, you are doing everything wrong, or you don’t know anything. I have stopped listening to them and I have decided to focus on the program and when I have some doubts, I always go back to what I really believe in. Everything works step-by-step and little by little forward. This program is not for everybody. I know it for sure. But, I decided to give it a chance, and it has worked for us.
“I now can sleep peacefully throughout the night because I am certain that my daughter will go farther than I have ever imagined.”
Ana Sofia has crawled, crept, walked, laughed, talked, read and sung before she was 20 months old. She is capable of understanding perfectly everything that you tell her. She can make choices of what she wants and likes. Thanks to my doctors, therapists, friends, and most of all, staff members of The Institutes, we have gradually regained the peace, tranquility, and hope to our lives.
“My life has been really different from the moment my daughter was born. Her life has been a life-long lesson. I now can sleep peacefully throughout the night because I am certain that my daughter will go farther than I have ever imagined. She will grow up to be a smart, independent, and happy woman and will teach life and love lessons to those who have an opportunity to know and meet her.”
“All my admiration and love from the bottom of my heart to the entire staff of The Institutes for giving us an opportunity to help Ana Sofia beat her very unfavorable odds and never suffer from disability!”
Mother has chosen not to accept the dire predictions and grim prognostications. Instead, she has chosen the path “less traveled by” and for her and her beautiful little girl it is making all the difference.
For more information, or to enroll, Contact Ashley