Williams syndrome is a rare genetic disorder that causes a variety of symptoms and affects many parts of the body. As reported by the Genetic Home Reference, it includes mild to moderate intellectual disability, unique personality characteristics, distinctive facial features, and other characteristics.
Ryder’s inspiring story
Ryder James was born at 5 pounds and 7 ounces with extremely low blood sugar, and his parents were told their baby boy will forever be a vegetable. Nevertheless, they decided to fight anyway, and show incredible results.
Right after the labour, Ryder’s mom was told her has a heart murmur and will need additional medical checkups. Of course, they went through numerous follow ups, tests, CT scans, but couldn’t identify the main reason.
But at the age of 2, Ryder was diagnosed with Williams syndrome. In couple of months, he underwent the open-heart surgery. But unfortunately right after the surgery he had an allergic reaction to the plastic on the bypass pump, which caused a severe inflammation.
We came into that hospital with a walking, self-sufficient child and walked out with our child in a wheelchair not being able to do anything for himself.
Doctors said there was no hope for a better life.
Ryder will forever be a vegetable and drool all over himself.
The boy had a lot of therapy and doctor appointments, but nothing helped. After four years, his parents can finally say and accept it.
After some time, Ryder’s sister Harper was diagnosed with a rare genetic deletion called 3p 26.3 and level 3 severe autism.
Their parents are real fighters, who never give up and believe in their children.
I believe this is God’s plan. Although it was not expected, I’m happy we have some kind of answers and can get her all the help she needs to blossom. We have so much to learn, but that’s the beauty about this journey.
And every little success makes them happy.
Life with Ryder now is no simple task, but the things he’s taught us during his time on this earth are more than I could ever learn in a lifetime without him. He’s my joy. He’s my fire to keep going. He shows us that no matter what or who tries to bring you down, you can rise above and do what they say you can’t. We’ve had some good success with DBS. Ryder is now walking independently, can feed himself with a fork, and can sit on his bum for 4 minutes. It’s little milestones like this that truly make us appreciate this journey that has brought us here.
By the way, Ashley started a blog, where she shares updates and raises awareness about her son's condition. She appreciates every moment and thanks her son for teaching her so much about life.
Ryder’s story inspire other parents of special children not to give up, but to move forward.