Our Story...

I am going to tell our story because it is relevant to this program, and it is what is behind my motivation and passion for it. I haven’t talked about my family much, but as I have spent more time on this program, it now feels like a good time to share.

In October of 2002, my wife gave birth to our second child, Nathaniel. Our first child, Sierra, was 4 at the time. When Nathan was born, he was born with a condition called Spina Bifida.  We knew of his condition before his birth, and he was not expected to survive at all after he was born, due to the severity of, and his form of Spina Bifida. He did survive against long odds, and faced several surgeries early in his life. He actually had three in the first seven days after he was born. Then, after six weeks of struggle, he passed away in December of 2002.

Looking back, we were certainly blessed to have had him, and still have him, in our life at all. We learned so much about him, ourselves, and the generosity of others during that time. One of the biggest lessons I learned is how smart, resilient, and amazing kids can be. Like I said before, our daughter was four during this time. Yet, out of all of us, I think she had the most strength. She showed us what a bond between a brother and sister can do, even in such a short time. She is the reason both my wife and I stayed sane at all through any of this. At four years old, she truly amazed us with her ability to cope, care, and be there for her little brother. Also, our son touched people all over the world in his six weeks. He had people as far away from us as Scotland, and Australia pulling for him.

Three years later, we were blessed with our third child, Braden. When we first found out my wife was pregnant, we went through a multitude of tests due to our history. We were given the crushing news at that time that this child would too be born with Spina Bifida, and most likely have the same outcome as our first son. Where his level of Spina Bifida was indicated, the best we could hope for at that time was no mobility, feeling, or control from his belly button down. Also, with some of the associated conditions with Spina Bifida, Hydrocephalus and an Arnold Chiari II Malformation, we were told that there would be little or no cognitive ability from our child.

Well, when he was born in March of 2005, he came out kicking and screaming, a VERY ticked off little boy! It was one of the most wonderful moments in my life. Usually, with Spina Bifida kids, they immediately face two surgeries in the first few days after birth. Braden came out strong enough, that he had his first only hours after he was born, which was a surgery to close the area of his Spina Bifida. The second surgery was the next day, which was to insert a shunt to relieve pressure in his head from the Hydrocephalus. He came through both of those surgeries with flying colors! He was actually sent home only 11 days after he was born, which is amazing considering his prognosis!

Today, more than five years later, Braden is doing very well. He is bright, energetic, humorous, good natured kid, and a very typical little boy. As for his physical abilities, well, doctors don’t always get it right. This time, they were happy to have underestimated Braden’s abilities. Where Braden’s Spina Bifida occurred, he should not have the ability to feel, move, or control anything below his belly button. Well, he can. He crawls, can scoot on his bottom, can use a walker some, and can pull to stand at furniture. He does have a wheelchair for longer distances, and to give him independence, which it most certainly has.

Over the last several years, Braden has had nearly a dozen surgeries, most occurring at Riley Hospital for Children, here in Indianapolis. Usually, his sister stays with Grandma and Grandpa while he is in the hospital.

This is where this program comes in. During stays at the hospital, or even times at home recovering, little things go a long way for kids. One of his last surgeries, race car driver John Andretti made an appearance at Riley, and visited some kids’ rooms. He came by to see Braden, and even though he had no idea who Mr. Andretti was, he did bring a small Hot Wheels size race car, which Braden took in amazement, and held onto for most of the rest of his hospital stay. He also got a t-shirt, and his big sister did too. Things like that stick in a child’s mind, and are as comforting as anything else can be. And, as a parent, it was one of the most wonderful things I have seen from someone I don’t know.

This program can be one of those wonderful things. It can be a help to parents who have children coping with something of this nature. It can be a help to brothers and sisters of these kids, who often feel left out due to all the attention being paid elsewhere. It can be a help to kids who are still in the hospital, who are at home sick, who have lost a loved one, or have gone through anything that a little box of toys can help to mitigate.