Editor’s Letter – January 2014 Edition

January 7, 2014 / Comments Off

Happy New Year!!

I am so excited to welcome in 2014!! Last year was wonderful. As you know we first launched Angelman Today over the summer and had such a great response with support from the community and the scientific and medical professionals involved with Angelman Syndrome.

I am hopeful for the future with the ongoing research projects funded by hardworking foundations across the globe. I am so very happy to see the alliance of foundations in funding research.

I not only wish you health and happiness in the new year, but will search high and low to find you information, products, and services to help make your today easier and your future brighter! We brought you the article last edition about MAPS doctors, they are, in my experience the ticket to a healthier today and an even better tomorrow.

Warm Wishes,

Lizzie Sordia

Editor-in-Chief

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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