The young man in the story below does not have Moebius; he has another rare condition--spina bifida. But we can learn from him. Read on:
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A 9-year-old boy with two conditions that affect his brain and spinal cord has not let either diagnosis or the 20 surgeries he’s had prevent him from dreaming big.
Tyler Bois, who was born with spina bifida and a Chiari malformation, a congenital defect in which the back parts of the brain slip into the spinal cord, underwent his first surgery at Children’s Hospital of Orange County to close the lesion on his back when he was just one day old, according to Boston Children’s Hospital.
“His surgeons there [Children’s Hospital of Orange County] performed his first six surgeries and saved his life,” Tyler’s mother, Amy, said in a news release. Tyler also underwent a tracheostomy at six months old to help him breathe and reduce pressure on his vocal cords.
“People don’t often say it, but the trace was a blessing,” Amy said in the news release. Tyler was able to eat by mouth, and the family, which also includes dad Steve, normalized it as best they could by encouraging everyday activities like swimming.
The Bois family relocated to Vermont when Tyler was 1 and transferred his care to Boston Children’s Spina Bifida Center, where his subsequent surgeries have taken place under the care of neurosurgeon Dr. Michael Scott and Dr. Ben War, neurosurgery director of the spina bifida clinic.
“Before we moved here, Dr. Scott and Tyler’s new team at Boston Children’s consulted his doctors in California. We felt like they knew him before they even met,” Amy said, according to the release.
When he was 3, Dr. Roger Nuss, an otolaryngologist, performed a three-surgery procedure to remove the trach and transfer cartilage from Tyler’s rib cage to enlarge his airway so he could breathe independently.
“Tyler is thriving. Every time I see him he’s breathing well without ventilation or oxygen, and his voice and speech have improved,” Nuss said in the release.
“The day Tyler’s trace was removed was the best day,” Amy said in the release. Tyler’s improvements didn’t stop there, as he started telling his parents he wanted to walk more and play with his friends.
The next step was for Tyler, who is getting ready for Cub Scout camp with his friends, to undergo a series of elective procedures with the goal of walking using forearm crutches and low-level braches.
Dr. Lawrence Karlin, an orthopedic surgeon at Boston Children's, has performed numerous surgeries on Tyler to correct club foot, hip realignment and tendon releases to help straighten his femur.
Tyler’s parents said that encouraging their son by reminding him they will help him achieve his goals and that they are all in it together helps with the recovery process.
“Dr. Karlin told me about a patient with spina bifida who walked down the aisle at her wedding. He said, ‘She made it that far because her mother pushed her when she needed it. You’re doing the same for Tyler. It will pay off in the end.’ That really made my day,” Amy said in the release.
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