STANTON — Shannan Kooistra and her husband, Josh, can’t help thinking of their 3-year-old son, Zade, as their “miracle” child. The rambunctious tyke, paralyzed from the hips down as a result of being born with myelomeningocele spina bifida, had undergone eight major surgeries before his second birthday.
A shunt embedded in his brain carries excess spinal fluid from his head to his abdomen. And of course, he cannot walk.
But these days, thanks to a coordinated effort by several area Lions Clubs, Zade zips around the Kooistra home with an ease he never could manage in a traditional wheelchair.
Zade’s new “ride” is a Zipzac, a low-slung, wheelchair-type device designed specifically for young children with mobility issues. The chair’s low center of gravity allows Zade to pick up and play with his toys without crawling in and out of his traditional wheelchair.
None of this would have happened, however, without the help of the Lions.
In January, Shannan sent a letter to Lions International explaining Zade’s story and mentioning the Zipzac, which Shannan’s father had seen on television during a segment of “Good Morning America.” The device, like most medical equipment, wasn’t cheap. At just over $1,000, it was a luxury the Kooistras — who have two other children — could not afford.
In her letter, Shannan wrote, “(Zade) is a typical little boy who wants to be independent everywhere, including home.” She went on to enumerate Zade’s other medical problems and explain the differences the Zipzac could make in his young life.
Lions International forwarded the letter to Larry Beardslee of the Stanton Lions Club.
“(The Zipzac) was more expensive than we could manage,” Beardslee said. “So I contacted six other area Lions Clubs to see if they would participate. We all went in together, got the pledges and ordered it. Now the little boy has the cart that gives him his freedom.
“I was so pleased that all the area clubs participated,” he said. “The little boy is a delight to be around. It’s great to help a little guy like that have some of the things he couldn’t have otherwise.”
Shannan said she was amazed at the speed in which the Lions Clubs took care of purchasing the cart. She initially was pointed in their direction by the manufacturers of the Zipzac.
Since the device is so new, it is not covered by most insurance carriers, Zade’s included. Without the help of the Lions, Shannan added, it is unlikely her son would ever have gotten the chair.
Myelomeningocele like Zade’s is not a particularly uncommon condition, afflicting about one in 800 children; fewer than one in 1,000 in its most severe form.
“It’s the No. 1 permanently disabling diagnosis in the country,” Shannan said. “What happens is that the spine grows outside of the body.”
Some cases of myelomeningocele can be operated on in utero, prior to birth. Zade’s case didn’t allow for this, however, and he received his first surgery shortly after being born.
His second surgery followed nine weeks later, then another at 15 months.
“He’s had about a bazillion surgeries so far,” Shannan said. “Every month that goes by we wonder what we’re going to encounter next. We’ve always seen Zade as a miracle and have stuck by our faith. For Zade, what will be will be. We never talk about his long-term prognosis; he’s going to live a long life and we do everything we can to prevent anything from going wrong, health-wise.”
As for Zade, he’s happy just to be able to get around and reach his toys.