Angels in Action – Sydney

November 7, 2014 / Comments Off

Celebrating the Abilities of our Angels

By Suki Sandhu, Mom to Sydney age 19

We did not receive an official diagnosis for Sydney until she was 15 years old. I always knew there was something more than just being developmentally delayed. Physician after Physician did not know. The diagnosis was not going to change anything about Sydney, it was for me. It helped me understand and was therapeutic for my 15 years of unanswered questions.

To do my part and help raise awareness, I had the opportunity to speak with the medical staff of Great Ormond Street Hospital and reminded them that the diagnosis is as important for the parents.

Sydney loves going to the movies, we take her at least once a month. She loves musicals on Broadway, searching YouTube videos on her iPad, going to the park with a zip wire and walking the dog.

My son, Nathan, was diagnosed with Angelman Syndrome shortly after his second birthday. He didn’t walk until he was almost three years old. The prognosis that doctors gave him was grim. He wouldn’t be able to walk, talk, or do much of anything. The doctors said that Nathan would have epilepsy, constipation, feeding issues, acid reflux, and sleep issues. Therefore, he would require lifelong care.

Today, Nathan runs, says “Mama and Papa”! Nathan’s seizures, that started when he was 15 months old, have stopped due to dietary therapy. Also, he has no more acid reflux, no more constipation! His sleep disorder is under control without medication. He sleeps ALL NIGHT! We have beaten the odds of Angelman Syndrome. He is not lucky, his progress was not by chance but because I started him on dietary therapy very early. Monitoring his health very closely has been crucial. Very specific, and in-depth testing, allowed us to dial in his health like a fine tuned race car.

This is the hope and inspiration I want to share with the world! His genes are not his destiny.

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