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All Were Aboard To Help Thomas

Tribune photo by D'ANN LAWRENCE WHITE

Chris Clark of Taylor Morrison talks to Thomas Tucker while friends play on the new equipment employees of the construction company built for the Tucker family.

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By D'ANN LAWRENCE WHITE

dlwhite@tampatrib.com

Published: February 18, 2009

SEFFNER - Diagnosed with spinal muscular atrophy at 18 months old, Thomas Tucker III of Seffner has never had the opportunity to run, skip or climb on playground equipment with other children.

Instead, he smiles as he watches them play from his motorized wheelchair, never complaining about what he can't do, said his mother, Janice Tucker.

Instead of dwelling on the things he can't do, Thomas, now 11, focuses on the things he can do. Among them, Thomas has been fascinated with trains since he was a toddler, collecting model trains and serving as conductor of his own miniature railroad.

So when the Kids Wish Network of Holiday asked Thomas to make a wish, he passed on the vacation trips and the opportunity to meet celebrities. What he wanted was a place dedicated to his model train collection.

The Kids Wish Network is a national nonprofit agency dedicated to creating happy memories and improving the quality of life for children with life-threatening conditions, says wish coordinator Jill Atchison.

Spinal muscular atrophy is a motor neuron disease affecting the muscles that are used for activities such as crawling, walking, swallowing, and control of the head and neck. About 1 in 6,000 babies is affected with the disease.

It affects muscles throughout the body, although those closest to the shoulders, hips and back are often most severely impacted. Spinal muscular dystrophy keeps the body from producing certain proteins muscles need to operate correctly.

Without that protein, motor neurons, the body's sensory messengers, shrivel and die, resulting in muscle weakness. Most children with the disease die before their second birthday.

Thomas is among the minority of survivors. But the disease also causes scoliosis, curvature of the spine, and he had to undergo a surgical procedure two years ago to have metal rods inserted into his spine to straighten it.

"The surgery went great, but after the surgery, his right lung collapsed, and an air pocket developed around his heart," Janice Tucker recalled. "We would have lost him if he hadn't been in the hospital at the time."

Thomas was placed on a ventilator for a year to keep his lungs inflated. He has a tracheotomy tube in his throat to keep his weak muscles from closing off his esophagus, and he is monitored at night by a nurse. Because of his medical needs, he had to withdraw from Schmidt Elementary School and be home-schooled.

His father, Thomas Tucker II, said hobbies such as collecting trains have become the center of his son's life. Things got a bit more interesting at the Tucker home a few years ago, when the couple agreed to adopt four brothers: Kyle, 12; Eric, 8; Jaiden, 7; and Dylan, 5.

"They've been great," Janice Tucker said. "All the boys get along so well, and they even help with Thomas."

Making Thomas' dream come true was more than a year in the making, Atchinson said.

She contacted Lee Latimer, who works for the Sarasota division of the construction company Taylor Morrison of Florida and is affiliated with the Future Builders of America.

It was an offer that Latimer, the father of three children, and his boss, Chris Clark, the father of a 17-month-old daughter, couldn't refuse.

"Every year, our company does something for the community, but we especially like to do projects that impact children," Latimer said.

The plan was to build an air-conditioned, 10-by-10-foot playhouse outfitted with shelves for the model railroad track and trains. Switches within Thomas' reach would allow him to operate the model trains.

"But when we got here, we noticed that the play equipment in the yard was falling over," Latimer said. "We wanted to do something for the other boys in the family, too, so we built them a new playset."

"We're a very family-oriented business, and it's such a good cause, you can't go wrong," Clark said. "Thomas is such an amazing kid. He's always so patient, always in a good mood and so grateful. And we loved working with the Kids Wish Network. I wish there were more organizations like them."

Members of the Kids Wish Network, employees of Taylor Morrison and the Tucker family celebrated the completion of the train shed with a party at the Tuckers' Pine Street home Feb. 7, featuring barbecue donated by Lamar Blair, area manager of Sonny's Real Pit BBQ, and a cake donated by Shannon Patten of Publix Super Markets. Meredith Abraham of AnytimeCostumes

.com supplied engineer's hats for Thomas and his father.

Disc jockey Jeffrey Evan Mufson of Jemstar Entertainment played train-related music and had party-goers form a human train - with Thomas in the lead.

Thomas couldn't speak because of the tracheotomy tube. But the smile on his face made his feelings obvious.

"Thomas has been playing with trains since he was 2 years old," his father said. "This really is a dream come true."

Also donating to the effort was Jim Di Santo of Freedom TS Enterprises, who donated the custom shelving for the train shed; Laura Kolnoski of Atlas Model Railroad Co., who donated track and accessories; LC Creations, which donated train-themed bookends, shelves, a coat rack and a table; and the Sam's Club Foundation, Brandon Elks Lodge 2383 and the Fraternal Order of Elks Brandon Aerie 3566, which gave money.

For information on the Kids Wish Network, call (727) 937-3600 or visit www.kidswish

network.org.

Reporter D'Ann Lawrence White can be reached at (813) 657-4524.

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