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FAST – A New Non-Profit Partner: A Personal Story

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.

Nate_baby

Baby Nate!

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.

Nat&Nathan2

Nat and Nate

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.

Nat&Nathan

Nat and Nate

8 Responses to “FAST – A New Non-Profit Partner: A Personal Story”

  1. Danielle Pinders February 15, 2013 at 11:41 am #

    Thank you for sharing such a beautiful and personal story! Thank you for helping make a difference!

  2. Lisa Arlt Escoto February 15, 2013 at 12:55 pm #

    Thank you so much for sharing your story! My experience with Elena, my 7-year-old angel, has been very similar. As is my hope for a quick cure for Angelman Syndrome.

  3. Geri Quintanilla February 15, 2013 at 2:10 pm #

    Thank you Nate and the Salvione family for sharing your story and for bringing awareness and research money for our family and friends affected by Angelman Syndrome. We love the Salvione family. HI NATHAN!!!! From Joey Q and family…

  4. Sharon Baer February 15, 2013 at 3:54 pm #

    Thank you for the beautiful summary of your life with an Angel! 41 years ago I had the wonderful pleasure of giving birth to an Angel. Shayne was 25 before we discovered he was an Angel. I am so happy that there is a chance for better lives for Angels and there families. Your story is so familiar and it brings a smile to my face. I lost my Angel to colon cancer on November 14, 2008. He would have been 37 2 weeks later. He taught me so much during his living and even more while he was dying. He lived and died to touch lives like no one else could ever do! I’m so thankful for this organization to help me keep close to those who understand. Bless you all!

  5. Kaaren Stocklin February 15, 2013 at 4:46 pm #

    Nat, thank you for writing this.

  6. Sue Atchison February 15, 2013 at 5:54 pm #

    Nathan is my oldest grandson. My heart welled up with love as I read this. Nat and Jen are beyond fabulous parents and Nate is so blessed to have them as we all are blessed to have him in our lives!
    Thank you to Tango Card for partnering to help our Angels and their families! We are grateful!
    Thank you to Nat for sharing this!

  7. Lorrie in KC February 16, 2013 at 6:32 am #

    Our son, Judd, is 22. He LOVES to sit on dad’s lap! Your picture made me laugh. It looks so familiar. Don’t those moments just take your breath away…in more ways than one!
    There is so much love in that human package called “our Angels”.
    Well written. Thanks for sharing and Happy Angelman Syndrome Day!

  8. Vallabh saraf September 16, 2016 at 3:07 am #

    Thanks nat for sharing ur story ,
    Similar to mine as I have a little angel of age 4 .my angel also taught me a lot in life that I had never before. N I do believe we r very close to find a cure as FAST and other organisation do their work to cure for AS

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