Our Journey Begins Here

September 13, 2013 / Comments Off

The Journey Begins Here

Together, we are all on a journey

A journey that is the same and different

There is no right or wrong way

We span across the globe

There is so much we can learn from one another

We can share our experiences;

of laughter, joy, failure and triumph

Together, our global community

will become connected like never before

And we will make great progress

Improve the lives of our families

And maybe… just maybe…

Take part in the ultimate solution

in finding the cure!

~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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