Wheels for Pernille

In 2007, Pernille Urban was diagnosed with Limb Girdle Muscular Dystrophy, a progressive, genetic disease that weakens core muscles in the body. The weakened muscles make walking difficult to impossible, especially as the disease progresses.

 Pernille is an incredibly determined and independent woman, and she has fought to overcome a bleak prognosis, holding on to as much independence as possible. In fact, her dogged determination has helped her go without a traditional power chair much longer than any of her doctors and physical therapists expected.

But as determined as she is, walking for Pernille is dangerous. A normally functioning body is able to “self protect” in a fall. If you or I fall, we instinctively put out our arms to protect our bodies. We pull up our head so that it doesn’t hit the floor when we do. But Pernille’s body, core muscles weakened by MD, cannot do any of those self-protective things. So she is susceptible to significant injury if she falls (and, unfortunately people with MD fall really easily).

Though a scooter has helped her over the last two years, its days of being a safe, healthy support for her are done. Pernille had no trouble getting approval for a power chair, which is something that will provide her safer mobility and support for spine, neck and head.

And the good news is that her insurance will pay for a majority of the cost of the chair. She and her husband, Tom, will need to pay the rest; though with one salary and Pernille in grad school, funds are tight.

Here’s where it gets especially difficult financially: the power chair itself is a relatively small part of funds needed because the power chair necessitates a vehicle fitted to accommodate it. The scooter could be driven on a ramp and raised behind a standard car. But that assumed that Pernille could get off the scooter, raise the ramp, and walk around the car to get into the car. It also assumed that she could protect the scooter when it rained by covering it with a tarp. Her resolve made most of that doable … for a time. But it’s no longer safe, and she has fallen doing it and ended up in the ER with a concussion. The power chair will provide her the safety she needs, but it also means she needs a vehicle that enables her to “drive” the power chair right into the car and access the car’s controls from it. With the progression of MD, it is the only safe option for her.

So in addition to the portion of the power chair bill, she and Tom face the cost of a van and modifying it for power-chair accessibility. They’re working hard, with a lot of help, at trying to get the cost of equipping a van covered by Vocational Rehabilitation. But best case would be that Vocational Rehabilitation pays for most of the vehicle modifications, and Tom and Pernille pay for the van itself and any remainder. A conservative estimate is between $20,000-30,000. For them, this is an impossible amount.

Go Fund Me pages have been such an amazing way for folks to raise money for all kinds of things. And our hope is to raise ALL the funds Tom and Pernille need. Your contribution will help an amazing woman move forward safely. It will enable her to finish her degree. It will make it possible for her to work in her field -- as a contributor in our society (and her working will enable her to repay grad school loans and past MD-related medical expenses). She has already contributed so much and has so much more to offer. Let’s help support that! Meanwhile, we’ll keep you posted on where we are and how far we have to go. Thanks so much!