It’s not particularly unusual for a child to make a wish. But Jenna’s request to the Make-A-Wish Foundation was peculiar in its practicality. No Disney World trip, no meeting with a celebrity or athlete, just a little help to do things more independently.
Jenna, 7, wanted to reach her dresses and shoes. Her wish came true earlier this month with a bedroom makeover.
Jenna, who lives in Cottleville, was diagnosed with spinal muscular atrophy [type 2] at age 18 months. The disease is characterized by progressive weakness. She has never walked, crawled or sat up without help. She has very limited arm strength. A common cold could send her to the hospital – a complication with which she is all too familiar, having been hospitalized three times for respiratory issues. She receives spinal tap injections as part of a drug trial to slow the progression of her disease. IVs and blood work are a threat because her weakness can cause her veins to collapse. In the future, she will need to have growth rods inserted to combat scoliosis.
That’s one reality for Jenna and her family. Another is that Jenna is a normal 7-year-old girl. She has lots of friends, enjoys drawing and crafts, and plays power wheelchair soccer. She likes shoes, clothes, drawing pictures, watching TV and listening to music.
Her mom, Darlene, wasn’t surprised by her daughter’s wish. “She wants to be like everyone else, that’s super important to her,” Darlene said. “So we’ve always come up with things around here that she can do herself.”
Her daughter loves to shop and things were piling up in her room and the basement is filled with toys, Darlene said.
CeCe Etter, wish coordinator at the foundation’s Ballwin office, said, “Every Wish kid is so different and every situation is so different, it just comes down to the kid’s imagination and what they can create – we work off their dream.”
Jenna’s room makeover is one of 335 wishes granted this past year by the Make-A-Wish Foundation of Missouri. Foundation officials say children’s wishes typically involve meeting people in certain professions, such as a baker, firefighter, favorite celebrity or athlete, or getting something, such as a computer, puppy or playhouse, or going somewhere like Disney World or a theme park, major sporting event or tourist destination.
Mickey Mouse took a backseat to a newly refurbished room that allows Jenna to pick out her clothes and store her shoes and jewelry in easy reach; a room where she can move around with ease in her wheelchair and do homework on a new desk. It’s a place where she can do things herself.
“It’s special, it’s really something that means a lot, and she’s going to use it every day,” said Etter. “That it comes from the mind of a 7-year-old, it’s pretty awesome.”
Closets By Design donated $13,681 in services and products to create Jenna’s new room and closet.
Aug. 11 was the unveiling of the room at Jenna’s house. The room and new closet design were not a surprise. Etter and a designer from Closets by Design sat down with Jenna and her family earlier to work out the design. The surprise for Jenna was seeing how the design turned out.
She arrived home from school to see her room occupied by family, Make-A-Wish staff, and media there to capture the moment and craning to see Jenna’s reaction.
When Jenna wheeled into the room, she saw a white closet that includes decks of small drawers at a height she can reach and easily open. Adjacent to the drawers is a small armoire with a mirror.
The main closet features two pull-down rods connected to a unique clothing rack for hanging dresses and other clothes. “This will give her more autonomy because until now her mom has had to go and get her clothes for her and lay them on the bed,” Etter said.
As Jenna toured and tried out features of her new room, and posed for pictures, her smile grew. The room, too, is designed to grow along with Jenna – gift that will keep on giving.