A special post for FAST and for Nate Salvione, by Nat Salvione:
February 15, 2013 is the first ever Annual International Angelman Syndrome Day and we’re proud to announce that Tango Card has launched a partnership with a new non-profit – FAST, the Foundation for Angelman Syndrome Therapeutics. Starting right now you can donate some or all of your Tango Card dollars to FAST (or one of our other fantastic non-profit partners).
Your donation will help FAST fund research to develop meaningful therapeutics for Angelman Syndrome and other related disorders. FAST is committed to assisting individuals living with Angelman Syndrome realize their full potential and quality of life.
FAST is particularly personal for me as my son was born with Angelman Syndrome 13 years ago. My wife and I had been married less than two years when we received the good news that she was pregnant with our first child. We had just finished a 6 month engagement with a campus internship in Texas and were looking forward to settling down and beginning family life in Seattle. Even though we had very little money at this time – I rushed out to buy a baseball mitt, dozens of my favorite children’s books, and a Thomas the Tank Engine wooden railroad set. Our house was filled with hope and expectations of what life would be like with our son, Nathan.
When it was time for Nathan to arrive – the actual delivery was a little rough. We were admitted to the hospital for 2 separate 24 hour sessions and still no Nathan. He was obviously very content to make us wait. Ultimately, my wife needed a c-section and we welcomed Nathan into the world. The first three months of Nathan’s life were difficult – he had jaundice, wouldn’t stop crying, wouldn’t nurse, and seemed to be in much pain. We definitely chalked it up as “first child” anxiety and began hoping he would grow out of the troubles.
On Nathan’s 3 month Well Child checkup our pediatrician noticed some strange “tongue movements” (she called them) and recommended we take Nathan for an EEG. The results of the test indicated that he was having seizures, a lot of them, over 100 a day. I was devastated. We had to find out the cause. The next 12 months were a nightmare. No one knew what was wrong. We saw specialist after specialist. Visited the hospital far too many times. We explored allergies, magnets, medicines – anything we could think of. Finally, one neurologist at Swedish Hospital suggested we look into Angelman Syndrome – a very rare, often undiagnosed genetic disorder – and consider having Nathan tested. After researching, we knew right away that was it.
The prognosis was heartbreaking – he may never walk, may never speak, will be prone to seizures for the rest of his life. We did not know what to do with the information – Nathan was still less than 2 years old. We were totally unprepared, totally depressed. My thoughts were filled with dead ends: what Nathan couldn’t do and what he would never be.
But we started learning more about Angelman Syndrome, started meeting some of the families in our areas, and started to understand the cause of it. And more than anything started to fall in love with our son. Thirteen years have gone by – thirteen awesome, difficult, amazing, unexpected, and love-filled years. I can’t explain in this blog post what Nathan has come to mean to me – partly because of space and partly due to the lack of words. He has taught me so much about love, trust, laughter, and the meaning of life. I could never ask for things to be different – it’d be a loss if they were. The world is a far better place with Nathan in it – many people in his life will tell you so.
I have not done enough to contribute to the Angelman community – I wish I could do more. But that is why we are so thankful there are organizations like FAST. Dedicating time, resources, energy, and faith to the possibility of a better life for our Angels. I am proud to be associated with them even in this small way. I hope when you give or receive your next Tango Card you’ll consider donating a little to FAST….and call it hope.