A family from Texas decided they could not sit idly by and wait for things to change, so they formed a charity in their son’s name to bring an end to the disease that will end his life. They need your help!
Ryan is like all little boys, he loves, laughs, plays, destroys things and can be mischievous. Ryan has a great smile, and when he laughs it is infectious. He has no clue he is living with a condition that could end his life without warning.
We Need Your Help to Save Ryan and The Others Like Him.
What is vascular Ehlers-Danlos syndrome?
vEDS is one of 13 classifications of a certain type of connective tissue disorder. vEDS use the rarest and most severe of all of the types of Ehlers-Danlos disorders. It is 100% Fatal and there is no treatment or Cure. vEDS is either inherited or a mutation in a gene. Ryan’s condition was not inherited. The only way to diagnose vEDS is with genetic testing.
According the Doctors and Researchers of vEDS, as many as 1 in every 10,000 to 20,000 people have this disorder and many do not know they have it until they experience a tragic event. Sometimes vEDS is not diagnosed until a person dies so no one truly knows how frequent this condition is. There is no known treatment or cure for vEDS.
Raise Awareness of and Fund Research to Cure vascular Ehlers-Danlos Syndrome
Create a World Where vascular Ehlers-Danlos Syndrome No Longer Has a Negative Impact on Children and Their Families