Letter from the Editor
It all began with a thought; a series of events like International Angelman Day and meeting other passionate parents. After receiving my son’s diagnosis, I immediately developed this strong desire to learn as much as I could about his genetic condition. Since there is currently no ‘treatment’ available, I asked myself; “what can I do to help my son today”?
As I learned of the advancements in research and the wonderful work that the foundations do across the globe, I was filled with gratitude and hope. But, my time is limited, as yours is, I wondered how I could stay current with this information? Inspired by International Angelman Day, I sat down to write a blog post on www.MeetTheFamaliesofAS.blogspot.com and the words never came. Instead, ideas of a simple resource that can give us information in the quickest way possible, directly in the palm of our hands. An online magazine! As I talked with Angel Moms, they thought it was perfect and had the same idea! It felt as though our conversations on how we are helping our kids was leading up to this.
My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday. Our story starts out very similar to many of yours. It was July to be exact. It’s funny how I find myself in this position just 3 years after his diagnosis. But I guess this is what happens when you light the fire of a Mother Lion! Don’t tell me what my son can’t do, he will show you what he can do! In our journey with Nathan, the hardest times were before we received his diagnosis. I knew immediately after birth something wasn’t right. He was transported to the NICU (Neonatal Intensive Care Unit) within 24 hours of being born. After seizures started we practically lived in the hospital. He was so sick and had uncontrollable seizures that almost took him from us. Doctors and specialist didn’t know what was wrong. Fragile X tests and others were inconclusive. We faced our darkest time alone with the unknown. I did not yet know of this wonderful and helpful community that was waiting for me.
Having a sick child and unanswered questions was the most helpless feeling for me and my family and I don’t want anyone to feel the way we did, no matter where they are on this planet. It is my personal goal to reach them and provide them with comfort or information, which ever they are looking for.
Nathan almost received a diagnosis of Autism, that’s what they were whispering around the hospital, but no one wanted to officially diagnose him. He had many of the same symptoms. Thanks to those whispers, it lead me to find the brightest people who knew how to help Nathan and make a difference in his life in a very short time. I can now say Nathan is healthy, he walks, has a few words, says “Mama” everyday (melts my heart), a few signs, sleeps through the night and is making gains every day.
Like most children with AS, Nathan (del+) did not start off sleeping very well, so since I was up, I put that time to good use.
I researched and reached out to AS families and learned from their experiences. I am going to share my team of experts with you as well as many others I have met along the way. The best news is that there are things we can do for our kids TODAY! Many of you are doing them already.
Now, more than any other time in history has it been easier to unite people on a global level. We are working on translating this magazine in every language so we can all communicate freely and quickly. I want to bring you the brightest minds in the field of AS including researchers and practitioners who treat our children everyday. Doctors that practice functional medicine and Bio-Medical treatments. All of these efforts will equal real suggestions that we can apply and see what will work for our individual children TODAY! Having options is important because there is a lot more going on with many of our kids then just chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptoms…
We will share with you experiences from families everywhere. There is nothing more powerful than an experience.
Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help you on your journey (or not).
This is our life, our journey to learn and grow. It’s going to be wonderful, terrible, filled with love, hugs and tears. We are in it together to help.
Sincerely,
Lizzie Sordia
Editor-in-Chief