Siblings Fighting Rare Syndrome!
Organized by: Janelle Shannon Lcsw
William, Domonique, & Victoria are children suffering from Ehlers-Danlos Syndrome, Chiari Malformation, and more. They were born with this syndrome. It wasn't discovered until a few years after we adopted the trio. They will never get better as there is no cure. The kids cannot play sports, run around, or walk for long distances. They break bones, sublux & dislocate every joint in their bodies. They hardly ever socialize with other kids and they can't go to camp. We want to make our children's lives more comfortable and to raise awareness about this crippling syndrome.
We need help as a family to wheelchair accessible the house, new wider doors, fix the deck to allow ramps, new driveway so they can get up and down it. They need splints to hold their bones in place, we travel long distances for medical help and expenses are out of control.
Please help us get them out and socialize and create a better life.