|Condition: Cerebral palsy|
Cause: Surgery complications
Age at Onset: 4 months
Marci Gutman isn’t sentimental about her daughter Ilana’s cerebral
palsy. “It happened during open heart surgery when she was four months
old. Fixed the heart but left her with irreparable brain damage,” she
explains briskly. Marci has other things to focus on.
Ilana’s not stopping there. “Her goals are bigger,” says her mother, “than expressing herself. She wants to find ways to help others express themselves too.” Ilana is an active fundraiser and public speaker, and is going to school to learn more about the field. “It’s her hobby, but it’s also her life,” says Marci. “There is no line for her.” Ilana lobbies and speaks with politicians at all levels. She explains that while she’s lucky enough to be able to afford services, she wants to make sure other kids have the same opportunities. Ilana must be pretty persuasive: she just got 4.5 acres of land donated for a state-of-the-art facility.
Ilana’s energy and determination are supported by her incredible work with the RT300 FES cycle at Creative Children’s Therapy (CCT) in Miami. The cycle is not a typical treatment in the CP community, but Dr. Leonard Elbaum, a visionary doctor at CCT and Director of the PT Dept at Florida International University, suspected it should be. After trying—and failing—to secure a cycle for his facility, Dr. Elbaum then found Restorative Therapies and spoke with them. Within a week, CCT had their FES cycle, not to mention in-person training for the therapy team. The doctor has since helped develop Giant Steps, an innovative, evidence-based physical therapy and fitness program for teens and pre-teens with spastic cerebral palsy or related conditions. Giant Steps includes the cycle in its intensive physical therapy program, with significant and surprising results.
Ilana’s progress has been tremendous since she began using the cycle. She’s gained over 200% strength in certain muscle groups. She went from being able to walk 3 steps to walking 40 feet in a prone walker (with assist due to other motor issues). During a bout of terrible muscle spasms in her hip, the cycle seemed to neutralize the spasms, and was the only exercise Ilana could do that didn’t cause injury, discomfort or pain.
The experience has taught Marci the importance of innovation. “You need to look beyond the recommended parameters and go out and try everything. You need to find the formula that works. And when you do, you’ll see that there are things out there that aren’t geared toward what you’re working with—but they turn out to be the ideal thing for you. This bike has incredible opportunities beyond its original use. For example, at Giant Steps, we’re working towards getting six of these FES cycles and having a parent-child spinning class. Can you imagine? We’ve already put up a TV and made the experience interactive—like the real world. That’s why these kids love it. You don’t need to reinvent the wheel. You just need to get creative with it.”
“Getting creative with the wheel” has had life-changing benefits for Ilana. And if her accomplishments so far are any indication, she’ll be helping other members of the CP community get creative too.
To keep tabs on Ilana’s efforts to assist people with disabilities find adaptive equipment and funding, visit her website at DisbabilityNews