Meet our 2008 family, Ben Carpenter and his parents, Jim and Tari

When Benjamin was born with 10 fingers and 10 toes, we were as relieved as any new parents could be.  For the first year of his life, Ben was happier and healthier than we could’ve ever hoped for.  When it was “time” for him to start standing and walking, though, we recognized that there was a problem.  We went to doctor after doctor who said “Ben is just tall” or “He’s just a lazy baby”.  Finally, with God’s grace, we found a doctor that asked to see Benjamin crawl.  When he saw this he said, “I think we have a problem”.

Several tests, MRIs, muscle biopsies and spinal taps later, we discovered that Benjamin was born with Spinal Muscular Atrophy, a genetic and progressive disease that doesn’t allow the nerves to receive messages from the brain.  SMA is classified as a type of muscular dystrophy and is the number one cause of infant mortality for those with the most severe form of the disease under the age of two.  Benjamin was blessed with a mutated form of the condition, so his ultimate prognosis is unknown.

In spite of his SMA, Ben has had a pretty remarkable 13 years.   He’s been to Japan with the Make-A-Wish Foundation, he has had “straight A’s” in school his entire career, and he’s been in Advanced Placement and Honors classes throughout.  He is the President of the 8th Grade National Junior Honor Society at his middle school, and is a Patient Ambassador for the Shriner’s Hospital in Tampa.  Last year he was one of 27 students from across the country to be chosen as “Nestle’s Very Best In Youth”, and has gone to Washington, D.C. as the School Safety Patroller of the Year for the Southeast United States.  He has piloted a twin engine plane and has gone scuba diving in the Tampa Aquarium.  If you were to ask him, however, he’d tell you his favorite activity is playing power wheelchair soccer with the Tampa Thunder.

As Ben has gotten bigger (and busier!), so, too, has his SMA.  Most children with SMA also have scoliosis (curvature of the spine) to some degree, as they lack the musculature to keep their posture.  As they grow, their weight simply pulls their body toward their center of gravity, causing the spine to curve and crush the internal organs.  One procedure to fix this is spinal fusion surgery, in which metal rods are “fused” to the spine and the pelvis, stabilizing and straightening the spine in the process.  Benjamin’s curvature before the surgery was over 90 degrees.  Afterwards, his curvature was just over 10 degrees.  He grew 3 inches in less than 8 hours.  The only difficulty that the spinal fusion brought with it was the new rigidity of Ben’s posture and his inability to position himself throughout the night as he lay in bed.  He’s simply unable to roll himself over or adjust his laying position in any way throughout the night.  This means restless nights for Benjamin, Tari and I, as he usually calls to be rolled from one side to another (on average) 3-5 times each night.  Being a healthy 13-year old, he’s not as light as he used to be, either.  We are hoping for help in getting Benjamin a bed that will help him self-advocate throughout the night, giving him the opportunity to adjust his position automatically or with the touch of a button, so that he can have a peaceful night’s sleep.  This would not only let him continue to reach his potential every day, but it would help to prepare him for his future independence and autonomy. 

Thank you for your time and consideration.

Sincerely-
Jim and Tari Carpenter