DENVER (CBS4) – Little Sammy Mac Robotham is turning 9 years old this year, and though he has to get around in a wheelchair and do weekly therapy, things are going pretty well. But nine years ago it was a different story.
Sammy was born with spina bifida — the number one birth defect in the world that affects the spine.
“That first day was really, really tough. We weren’t expecting it. He was born at Sky Ridge, and they took him to Children’s immediately,” said Stephany Robotham, Sammy’s mother.
Sammy went through five hours of surgery in the first eight hours of life and eventually 10 surgeries by the time he was 3 years old.
“When we first came home from the hospital, it was ‘What do we do? Where do we go? How can we help this child, thrive?'” said Robotham
It was soon after that when Stephany and her husband Mac were introduced to The Spina Bifida Association of Colorado.
“We had no idea of the number of kids that are out there in the state that have similar issues,” said Mac, Sammy’s father.
The Spina Bifida Association connects families together that have children born with spina bifida. Mark Deschamp is the board chair and president of the association and also lives with the condition.
“Because it is a birth defect, we have people of all different ages that are living with spina bifida. So the families can get help at any stage of the child’s life,” Deschamp said.
Over the years, Sammy and Deschamp have formed a friendship.
“Sammy really looks up to Mark a lot. He sees kind of a bigger version of him, I think, maybe in that he could grow up to be an adult that has a job and can drive a car,” Stephany said.
Deschamp has an adapted van that allows him to drive independently.
In addition to letting families know there are others going through similar issues, the group also brings kids to a yearly summer camp, and around the holidays everyone is invited to a Christmas party with Santa.
The association also puts together a big walk every year called “The Walk and Roll” where families can get together and see they are not alone.
The Spina Bifida Association of Colorado is not a group that searches for a cure, but a group that helps to make the lives of families living with spina bifida a little bit easier to handle.