Educate family, friends and community about dup15q syndrome.

Today, there are almost 1,000 families from around the world affiliated with Dup15q Alliance. Families and individuals with dup15q come from a wide range of backgrounds and are dealing with a variety of day-to-day issues.

This is our Story.

My Super Tough Amazing Nick, who is now 12 years old. Amazes me each day on how strong his will power is.

Nick has Dup15q-idic15, Lennox Gaustaut syndrome (seizures), global delay, autistic tendencies to name a few things he deals with on daily base.

He was diagnosed at 1 with infantile spasm, along with the idic.

He was doing well after we got the seizures under control at age 3-4. But age 7 it started going downhill with the seizures and the regression.
Then on top of that, is the fight you have to go through with the school district to get what he needs on a daily base.

So at age 9 he choked on a hot dog a day before Christmas and ended up in CHOP in ICU. That day we came VERY close on losing him. But as my nick has a strong will power he fought back!

After that the seizures came back again to the point that he wasn't having any quality of life. We decided to do the Corpus Callosotomy -brain surgery to help stop the seizures. It worked

For the most part... back seizures returned but nothing like it was.

Nick loves music, loves to ride his bike, to be outside in open fields, be in a very warm pool!

Every day is a challenge... every minute can be a challenge. But nick gives unconditional love... when he smiles the works stops, when he laughs it's even better.

Never doubt a dup kid ... always believe in them they understand more than you will ever know! You will be lucky to know one!!!