At 6 months old we found out he also has Optic Nerve Hypoplasia. what did this mean? Our Elijah was partially blind. Elijah does not walk or talk, but has a smile that can light up a city. He overheats because he can not produce sweat. He has had seizures and also has Asthma and Gastroparesis. Despite all of these obstacles, Our Elijah is such a blessing! Trying to help him with doctors that have never even heard of the syndrome has been a challenge. The Phelan Mcdermid Syndrome foundation is a lifeline. The families that are part of the foundation are more help than most medical doctors. Every other year, the foundation has a conference and invites all of the families to attend. Doctors, therapists, genetic specialists, counselors, service dog reps, and so much more attend the conference. Most of these professionals have had experience with our children. The conferences are crucial for our sons health.
It also benefits the siblings and the conference provides special activities for the siblings of our special needs kids.
Its a very expensive trip but necessary for our sons health and well being. Please help us reach our goal. Thank you for donating and taking the time to know our family.We will be having this online fundraiser, a apple bees breakfast and on Sat October 5th 6pm we will have a silent auction. Donated Art and donated baskets will be silent auctioned to raise money for this conference. That ks so much for your support.
- Sanjiv Shah
- Marsha Nelson
- Mark Driscoll
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more