Helen Doesn’t Hear “Can’t”, She Hears “Try”
Written by Carmella Rynearson, PATF Funding Assistance Coordinator
What do puppies, kitties, ice cream, and video editing software all have in common? Well, they’re some of Helen Macek’s favorite things, of course. I first met Helen, a 9-year-old girl from Moosic, PA when she was participating in an All Abilities Walk. I was immediately drawn to her energetic, bubbly personality. Helen was an ambassador for Allied Services’ Ryan’s Run Campaign that raises money and sends a team of runners to participate in the New York City Marathon. Allied has engaged in Ryan’s Run for 7 years, raising $2.1 million to promote miracles in rehab to change the lives of children and adults with disabilities, life-changing injuries, and chronic illness in NE and Central PA. Helen herself receives therapy at Allied two days per week. While Helen raves that she participates in this walk because, “It’s fun!”, her mother was happy to see that Helen was able to increase her walking from last year.
Helen is an extremely happy and active girl. She prefers to move around her home by hopping with her arms in a seated position. Born with Sacral Agenesis, a rare congenital disorder characterized by abnormal fetal development of the lower spine, Helen is paralyzed from her thighs down. Although she has some sensations in her lower body, it is sporadic. But Helen is very determined in all she does, and her parents nurture her enthusiasm any way they can. Rather than using the word “can’t”, they always choose “try” when Helen asks if she can do something.
Helen uses a variety of assistive technology to support her independence. She uses a wheelchair (with pink highlights) for traveling long distances and a (gold) walker to promote exercise. Helen has a ramp for wheelchair access into her home and she uses (leopard print) Ankle and Foot Orthoses (AFO’s) and Knee Ankle Foot Orthoses (KAFO’s) to help with support of her feet/ankles/legs. Funding for her assistive technology and other supports has been covered by a combination of her primary and state health insurance plans, as well as funding from Early Intervention, Shriners Hospitals for Children, and Allied Services.
Helen is an ambitious 3rd grader, by any definition of the word. One of her passions is editing videos, and she was very excited to show me a video she made with her iPad when I visited this past winter. Currently, the Make a Wish Foundation is helping her with her wish to learn to produce and edit videos. But, ask her what she wants to be when she grows up and she’ll tell you her goal is to open her own bakery called Kitty Coffee; she’s already created her own menu items.
Helen’s active life also includes happy memories of throwing out the first puck at the Wilkes Barre/Scranton Penguins hockey game and when I met with her she was anticipating going on a field trip to the Wilkes Barre/Scranton Railriders Baseball game this spring. In terms of sports, Helen also has her own bow and will start Archery lessons soon. And, as if she isn’t busy enough, Helen makes a point of attending themed board game conventions whenever they come to her area. She will be a Kitty Fairy this upcoming event. Despite some serious health scares in her lifetime, Helen remains extremely positive and involved within her community, making good use of assistive technology to support all her endeavors.