This fundraiser is for my phenomenal mother, Jennie Harriman. I am raising funds to help her afford a much needed power wheelchair, and a small trailer to transport it and enable her to continue her work as a traveling art and woodworking teacher.
Jennie has FSH Muscular Dystrophy (FSHD), a degenerative muscular disorder.
FSHD affects different people in different ways, and the progression can be unpredictable. Essentially, certain muscles become significantly weaker over time, causing difficulty, pain, and loss of function in some areas. There is no cure or treatment for FSHD. The only way to lessen the impact of the disorder is to conserve energy wherever possible, and prevent over-using already weak muscles. FSHD is also genetic, so I am affected as well.
For my mom, the weakness in her arms, shoulders, and legs has been slowly getting worse for many years. This spring, however, her legs suddenly got much weaker, and she is no longer able to walk. Because of the weakness in her upper body, she is unable to use a standard manual wheelchair to push herself along. A power chair is now her only option for getting around independently.
Bringing art to children
My mom raised me to believe that I could accomplish anything, and she leads by example. I had a wonderful childhood, full of laughter and love, and through it all she was supporting me as a single mother, while attending college and working full time. Seventeen years ago, she started her own business doing what she loves: teaching art and woodworking classes for children.
Her business has grown and developed through the years, and her recent focus has been on teaching woodworking classes to children, including those with special needs. She has conducted several art and woodworking residencies throughout Tennessee, and in other states throughout the country.
Jennie has always loved to travel, and these residencies allow her to bring woodworking opportunities to hundreds of children in all different areas.
For many of these kids, it’s the first time they’ve ever had the chance to use woodworking tools. Over and over, children respond with enthusiasm and engagement as they are instructed on how to use the tools, and are encouraged to build a project of their own.
Often for the kids with special needs, it is especially exciting for them to be given the opportunity and responsibility of using tools safely and doing work independently to complete the project.
Bringing that kind of joy and empowerment to children is what my mother is passionate about, and she does it well. Her only obstacle now is getting to the kids in the first place.
I work with her and provide transport and classroom assistance, as well as now pushing her around in a manual wheelchair. My FSHD further complicates things, as my own shoulder weakness makes it difficult for me to push her in the chair for very long.
Since she started using a wheelchair, she has taught two residencies using the manual chair. She was determined to still teach her classes, but the manual chair made it very difficult. Unable to move from one spot or approach students who needed help without first calling me over to push her, her usual level of connection and hands-on engagement with her students was restricted.
Frustrated with feeling stuck, she did use her feet to pedal herself around a few times, which resulted in three weeks of pain and increased weakness in her legs. With a powered travel chair, she will no longer be trapped in one place, but free to move through the classroom to instruct and encourage kids as she always has.
Finding a wheelchair
When my mom first realized she would need a wheelchair, we had no idea how complicated and expensive the process would be. Thankfully the Muscular Dystrophy Association had a loaner chair available for her to use for the time being, until we are able to get her power chair ordered.
When it does finally arrive, her own power chair as ordered by the doctor will have some essential features to hugely improve her quality of life, the most important of which is a seat elevator.
One of the struggles she has run into while using the loaner chair is the difficulty in reaching things like the sink, stovetop, and countertops. Again, the weakness in her shoulders makes things complicated, because it is very difficult for her to reach up and lift her arms above shoulder level.
Once she has the seat elevator, she will be able to rise up higher and easily reach the things she needs. The new chair will also be able to recline back for comfort and pain relief, and tilt forward to help her get up from the chair when transferring into bed, for example.
Unfortunately, this is where her insurance fails to help. Even with her doctor’s conclusion that these features are medically necessary for her condition, the insurance will not cover the expense of a seat elevator. Insurance will also not cover anything related to transporting the chair outside of the home. In order for her to be able to leave the house with her power chair (for work, groceries, appointments, etc.), we will have to come up with the money on our own.
A wheelchair accessible van would be ideal, but the cost ranges $10,000-$60,000 on average. For now, we are looking into getting a hitch and trailer for my vehicle to be able to transport the chair. If this fundraiser raises more than our goal, we will use the extra funds to purchase a wheelchair van so that she can drive places on her own again.
Breakdown of Expenses
Power Chair with Seat Elevator, after insurance: $5853
Estimated Fees: $450
Total Fundraising Goal: $7000
*If we can exceed this goal, we will buy a wheelchair accessible vehicle.
The faster we can raise funds, the sooner we can get the chair. The wheelchair company has no payment plan options, so we have to have the $5853 up front before the chair can even be ordered.
We are hoping to meet our goal by mid-November, so that we can put the order in and hopefully have her power chair before her next classes start in December and January.
How You Can Help
Thank you so much for your time and consideration in reading this post. If you would like to help, please consider making a donation to our fund and sharing this post on social media to help us find support. Any amount that you can contribute is deeply appreciated, and all donations are tax deductible.
My mom has managed to stay strong and positive through the years, despite her declining health and the difficulties it has presented. Of all the things she has had to let go of as her health has deteriorated, giving up on her love of teaching children is just not an option for her. Your kindness and generosity will preserve my mother’s passion, and change not only her life, but the life of each child she has the opportunity to teach.
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