Stories of NF: Ryker S.

I misunderstood the first time my wife told me. Ryker’s diagnosis, around 4 months old, didn’t hit me until the day after the NF symposium 6 weeks later. I had a pretty hard time with it and took months processing it.

We found out he had very high blood pressure in May, about 6 months after his diagnosis, and so that has been scary with all the tests, not knowing what would happen.

Very recently we found out that Ryker does NOT need to fly out to Boston for a surgery from a specialist. That was a very hard two month wait to hear that decision.

I’m worried about his health and all the unknowns that go with NF1. I worry about how kids will treat him since he will be different. Although, knowing Ryker’s personality, he will use it to his advantage.

Having a community of people in the same situation has been a tremendous help. Family and friends have been invaluable in their support and we couldn’t have done it with out them.

What has helped me the most is my faith. Knowing that there is a God who helps and watches over our family has been the biggest blessing and help. We are stronger because it helps us depend on His help.

Ryker loves puppies and roughhousing with Dad. If you’re not wrapped around his finger, it’s only a matter of time. Ryker loves Elmo and Sesame Street and tries to sing along. He is incredibly outgoing and friendly with everyone he sees. He loves turning into a “noodle” when you pick him up. I think I just need to classify him as a liquid.