Genetic Abnormality: It is not a Life Sentence
Reader’s Digest feature: Alex, a Brain-Injured Kid, proved the experts were wrong
Photograph by Noah Farris
When Alex was born, he was hypotonic and weak. Parents and doctors noticed he had abnormal facial features. The baby did not respond to people as much as other babies did. He was weak and did not smile. After genetic testing, he was diagnosed with Kleefstra Syndrome. He was one of only 100 children diagnosed with this genetic disorder at that time. His parents were devastated. They were very worried by the poor prognosis that came with such a frightening diagnosis.
After physical therapy did not seem to help Alex, his parents were determined to find a solution. After reading the book “What to Do About Your Brain Injured Child” by Glenn Doman, they immediately felt they had found something that could help Alex to progress.
He was unable to crawl and he had no words of speech.
Alex started the program when he was 11 months of age. He was unable to crawl and he had no words of speech. He had poor tactile sensitivity, and did not respond consistently to painful sensation. Parents knew he was behind his peers in many areas. This seemed like he was indeed a brain injured kid.
Using the book “Fit Baby, Smart Baby, Your Baby!”, they started little Alex on a crawling track, an environment that makes it easy for a child to learn to crawl which is an essential step for mobility development.
Parents attended the “What to Do About Your Brain Injured Child” course in Philadelphia, and then brought Alex to The Institutes to be evaluated and prescribed a specific program to do at home with his parents. This program included a nutrition program, a physical program to improve his mobility and a program of intellectual stimulation which included reading. Parents would later add a math program and a program of encyclopedic knowledge both of which he loved.
Little Alex enjoyed sophisticated math.
Alex was not only able to walk but he could run 50 meters non-stop.
At Alex’s last evaluation at The Institutes he was 6-years-old. He demonstrated reading at an impressive 7-8 year old level. His understanding was equal to his peers. He was not only able to walk but he could run 50 meters non-stop. His language had exploded to over 2,000 words of speech, and he had started speaking in sentences.
“Alexander has proved already, many of the limits we long believed were impossible to overcome fall away in the face of the right kind of hard work.”
His father wrote “if Alex goes on to lead a successful, self-sufficient life, it will be because, against the advice of many experts, we maximized every moment of his early years.”
Alex enjoying his life
Recently Alex’s life story was published in an essay written by his father in Reader’s Digest. He ends with:
“This, I hope, is my son’s lesson for all of us: Our approach to special-needs kids is completely upside down. We’ve only just left the dark ages when it comes to our understanding of how the human brain works. The potential waiting there is an enormous untapped resource. And, as Alexander has proved already, many of the limits we long believed were impossible to overcome fall away in the face of the right kind of hard work.”
We congratulate Alex and his parents. They did not give up and they didn’t give in. They are beating the odds and demonstrating that a genetic abnormality is not a life sentence. It does not automatically keep a child from living a full, happy and successful life.
Alex is living a full, happy, and successful life, every day.