SEFFNER, Fla. – Kids Wish Network grants a wish to an adventurous, young train enthusiast whose heart’s desire was a wheelchair-accessible clubhouse with room for his beloved model trains.
If you were to ask 11-year-old Thomas what was wrong with him, he’d explain to you that he has Spinal Muscular Atrophy (SMA), which is a neuromuscular disorder that affects his spinal cord’s ability to send messages to the muscles in his arms and legs to make them move efficiently. But he’d also tell you that nothing is “wrong” with him.
Despite his reliance on a wheelchair since he was two years old, Thomas has attained Webelos ranking in the Cub Scouts, he enjoys school and he loves to try new things. It’s Thomas’ positive attitude, spunk and determination that make him unique, not the fact that he requires round-the-clock nursing care to make sure that he’s able to breathe. Respiratory problems are just one of the complications of his condition; scoliosis, or curvature of the spine, is another ailment common to children with SMA.
Two years ago, Thomas endured surgery to alleviate his scoliosis by the insertion of two metal rods and 32 pins into his spine. Due to muscle weakness throughout his body caused by SMA, his lungs collapsed several times and doctors finally had to perform a tracheotomy in order for him to breathe. Tom says the family has always treated Thomas as though he is a typical child, but the tracheotomy has made life a little harder on his son. Thomas had always been mainstreamed in a typical school classroom but since the tracheotomy, he has required home-schooling.
As a toddler, Thomas was never able to sit up on his own, so his dad, Tom, gave him a model railroad and taught him to operate his train remotely while lying on the floor of the family’s home. It was one of the few activities that this creative father found that he and his young son could have fun doing together. As Thomas grew older and his collection grew, an ample, dedicated space for the railroad was needed but that just wasn’t possible in Thomas’ house that he shares with his four brothers and loving parents.
Thomas found out he was eligible for his own wish when a professional fundraiser from Kids Wish Network contacted his aunt for a donation. Kids Wish Network is a charitable organization that grants wishes to children with life-threatening illness. Soon after Thomas’ aunt nominated him, he was contacted by Wish Coordinator, Jill, who determined that his #1 wish was a place where he could comfortably play with his train collection. With the help of some very special sponsors, Jill was able to provide Thomas with a spectacular train shed and clubhouse at his home.
As if a magic wand had been waved over it, a basic 10-foot-by-10-foot outdoor shed was transformed by Taylor Morrison, Inc., into a finished clubhouse complete with landscaping, glass windows, wood flooring, electricity and painted walls adorned with train decor. In order to accommodate Thomas’ wheelchair, ramps and railing were installed, the entrance was widened and the center of the room was left clear of obstructions. Model train shelving was installed around the entire room for the railroad track and accessories, leaving a large space in the middle for Thomas to move about and view every inch of his model railroad.
Thomas’ New Train Shed
“Thomas was so excited about his clubhouse when it was delivered that he was trying to create a makeshift ramp out of scrap plywood to enter it before the builders had put on the final touches,” said Tom.
To celebrate the train shed’s completion, Jill arranged for a dedication party served up with cake, barbecue and a local DJ who provided music and entertainment. In addition to revealing the finished train shed to Thomas’ family and friends at the celebration, a new playground that the whole family could enjoy was also unveiled.
Tom says that he has had to talk his son into moving some of his bedroom furnishings out of the train shed and back into their home. “Thomas would live out there if he could.” He continued, “When people ask him how he likes his train shed, he says he’s really happy about it. He plans to have his home-school lessons out there.”
The excitement of the new clubhouse and the dedication party was a joyful diversion from Thomas’ medical problems. Indeed, there is nothing “wrong” with Thomas; he is just a very happy-go-lucky child with some special challenges. Kids Wish Network is very proud to have made this deserving boy’s wish come true.
Kids Wish Network would like to thank the following for helping to make Thomas’ wish extra special: Taylor Morrison, Jemstar Entertainment, Sonny’s Real Pit BBQ, Freedom TS Enterprises, Inc., Atlas Model Railroad Company, Publix Super Market, Inc., AnytimeCostumes.com, LC Creations, Sam’s Club, Brandon Elks Lodge #2383 and F.O.E. Brandon Aerie 3466, Inc.
Kids Wish Network is a nationally recognized non-profit organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children. If you know a child between the ages of 3 and 18 who may be in need of its wish granting services, please call 727-937-3600 or toll free 888-918-9004. For more information on Kids Wish Network, visit their website at www.kidswishnetwork.org