I started this campaign for Josie, my wife of 22 years, as a way for her friends, family, and others to show solidarity with Josie and help offset the mounting costs of living with a rare, devastating, incurable, primary mitochondrial disease (specifically, she has a degenerative neuromuscular POLG mutation).
Until early Jan 2022, she worked full-time as a physician-scientist and medical oncologist at the University of Pittsburgh and UPMC (University of Pittsburgh Medical Center). She is a dually board-certified medical oncologist and geriatrician specializing in 1) treating elderly newly diagnosed with breast cancer and 2) supporting the recovery of post-treatment survivors of any tumor type.
She loved her job. She devoted all her time and energy to bettering the lives of her patients, even in her free time, by creating a meaningful platform for cancer survivors called CancerSurvivorMD.
Her energy levels and stamina had slowly decreased over time. Still, it was quickly attributed to the many treatments she needed for a gynecological cancer that is currently in remission and developed due to a previously undiagnosed primary immune deficiency. Josie's decline accelerated after a hospitalization for a COVID infection in the summer of 2020. She became dependent on a scooter in early 2021 and a zero-gravity power wheelchair in early 2022. Her energy levels would run out quickly, and she would fatigue easily. It had become increasingly more difficult for her to sit up straight or to stand up or walk across a room without developing symptoms of strenuous exercise, e.g., shortness of breath, fast heart rate, and sweating.
Extensive testing eventually resulted in the diagnosis of primary mitochondrial disease, particularly a mutation associated with adult-onset and neuromuscular degeneration.
Eventually, the development of difficulties with her voice/talking led her to go abruptly on medical disability in early Jan of 2022. There are no curative therapies for this disease. She started an experimental medication in the spring of 2022 via compassionate release, which has improved her symptoms by about 20%. However, the underlying degenerative process will continue. She is currently dealing with worsening problems related to her vision and breathing. Prognostication is challenging for a mitochondrial disease per se, let alone how COVID's acceleration and the experimental medication play into this, but we were told that my currently 47-year-old wife hopefully has about ten years left to live.
As mentioned, Josie has a special powerchair, as pictured below, which was thankfully fully covered by her health insurance. But she does not have a wheelchair van. As a result, she is homebound. I want to be able to take her out for short trips to places across town to give her more stimulation and a connection with the world.
Your donations will help her live in a meaningful way with this disease and pursue her unstoppable (yet hampered) passion for being an advocate for cancer survivors. Josie is disabled, so our budget has become a bit tighter, despite our lifelong habit of living modestly and having disability insurance coverage. And the fact that we have a college-going child does not help. In addition, we suddenly have daunting expenses related to her disease.
The funds will be used to help:
- Purchase a wheelchair-accessible van, as pictured below. It is a Chrysler Pacifica that has been converted by BraunAbility, sold by MobilityWorks. Adding an extended warranty for the car AND the conversion parts results in a total cost of around $90K. This vehicle will allow her to drive her wheelchair into the car via the sliding door using an automated, foldable ramp. The selection of vehicles was limited based on the cargo weight limit, given that her specialized wheelchair weighs a whopping 450 lbs.
- Adapt our bathroom to become more accessible, as she will continue to lose stamina, function, and mobility.
"Dr. Josie" has helped so many people. I hope that we can give her some love in return. To close, please watch this hilarious video that exemplifies how I will be helped too.
Please donate only when you can. Every little bit helps.
Please continue spreading Josie's story so we can reach as many people as possible and keep it trending (#KeepDrJosieRolling).
We can't thank you enough for all of your help!