Help Alyssa Obtain Wheelchair-Adapted Vehicle

Hello -- My name is Jen, and I am fundraising for my niece, Alyssa.

Alyssa has Fibrodysplasia Ossificans Progressiva (FOP) and is one of only 900 people in the world with this incredibly rare disease. Occurrence is approximately 1 in 1 million. It is called the "stone man disease", where over time her connective tissue and muscle turns to solid bone and she will become entirely frozen and immobile - like a "stone statue", hence the outdated nickname. It is the only disease in the world where one body system turns into another, and means that she can never be vaccinated, has to be careful to never get hurt, cannot get certain treatments or medications, even IV fluids, as any damage to her body tissue creates inflammation which then turns to bone. It is a very rare disease with limited funding and no assistance for people who have it.

For most of her 21 years on this planet, Alyssa has been able to do most of what everyone else can although with adaptations. Her neck, upper arms, and one ankle became ossified early on and locked in place, but she still was able to walk around and earned her driver's licensed with adaptive devices on her vehicle. She has thrived with friends and pets and family, and her loving parents and grandmother have helped her with washing her hair and other smaller things as needed. Alyssa is brilliant and graduated high school with a 4.0, earning a full scholarship to the University of Kentucky, for which she moved out and started earning her degree to become a social worker.

In addition to these achievements, Alyssa also has spent years helping her parents raise her niece and nephew, whom they have had full custody of since birth due to their mother having addiction issues and their fathers being nowhere in the picture. Alyssa has played a large role in their lives and served as another parent figure to love and care for them. She loves McKenzie and Brantlee as if they were here own children, since her disease prevents her from having children.

Unfortunately her disease apparently has other plans, and suddenly began developing repeated severe inflammation flare-ups, which are the precursor to and cause of her then developing bone in those places, which ultimately locks them in place. This is extraordinarily painful and the cascade of bone formation these past several months has resulted in her losing her independence, and she had to leave college and her own apartment to come back home. She joined the FDA trial for the only FOP medication in the works, and was part of it for almost a year, but ended up with side effects that forced her to go off it. That was her last hope at a cure or or at least slowing progression.

Over the last 10 months, Alyssa's condition has taken a sudden rapid decline to where she has lost all independence and is now essentially bound to a recliner. She physically cannot sit upright as bone has now formed that has frozen her this way, and she can no longer walk. Severe flares in her arm and jaw are now risking her ability to feed herself and both arms are locked in place. One has only hand mobility left, the other has about 20 degrees of motion left. She cannot stand, lift or bend her legs, bend her waist, turn over or even shift her position in the chair, cannot turn her head at all, and now has also lost much of her ability to use a Playstation controller. She cannot bathe herself nor use the bathroom on her own. She cannot prepare her own food and is at risk of not being able to feed herself. She has lost weight and become very thin, and is at risk of pressure sores. She cannot leave her home as she has no way to do so. She no longer sees most of her friends and has no social interaction outside of immediate family and on her phone. She is bound to a recliner day in and day out, never changing. This is no way to live. FOP is eventually fatal, anywhere from in their 20's to in their 60's, and Alyssa's current state is no way for a person to spend whatever years she has left on this planet.

Alyssa finally got a wheelchair through insurance (see the most recent update) but is still in desperate need of a van adapted for her wheelchair so her family can get her to doctor appts. and take her to other places outside the home. As it currently stands, she cannot leave their home nor get to doctor appts. regularly because she cannot physically sit or lie down in a vehicle in a safe or secure manner (or that allows her to wear a seatbelt), and has no other way to get there.

The van she needs does not have to be the exact one in the photo, that is just an example showing how expensive and out of reach they are.

Alyssa's family lives below the poverty line in very rural Eastern Kentucky, deep in Appalachia, and this area has no public nor private resources to help her at all like larger cities would. MediCare provides nothing but her basic healthcare. They have declined repeated requests for assistance and adaptive devices and only just now after a year of fighting did they approve a motorized wheelchair. Alyssa does get social security each month but nowhere near enough to get what she needs.

As I mentioned earlier, in addition to caring full time for Alyssa, her parents also have full custody of their 2 grandchildren, an 8-year-old and 1-year-old, both of whom they have been raising since birth. They get no child support nor assistance for their parents other than food stamp assistance from the state. If that isn't enough hardship, Alyssa's father Jason fought and beat throat cancer 2 years ago, then right afterward their trailer home entirely burned down due to a faulty wire in their air conditioning unit catching fire, luckily while they were not home and were at one of Alyssa's appointments for the FDA trial. They had no homeowners insurance as they couldn't afford it. My mother in law gave them her home, which is where they have lived ever since, and moved in with us 2 years ago. They also have no reliable vehicle -- my mother-in-law has lent them her SUV and given up her own vehicle to try to help them transport Alyssa to and from the doctor to no avail. Alyssa's father also has severe neuropathy destroying the tissue in his foot/leg, and was forced to retire after 19 years working for the state of Kentucky -- 1 year before he was eligible for pension. Their income is barely cutting it. Their family has endured relentless hardship and they struggle every day, yet they continue on trying to do their best to take care of the people relying on them and love them immensely.

I am vehemently seeking assistance to help Alyssa obtain the wheelchair-adapted van she so desperately needs. I have contacted every organization I can find, all the local news stations in that area hoping they could run a human interest story on her and drum up assistance, and I heard back from no one.

It kills me that in this insanely rich country, a person can suffer the way she is and have no options for help and proper medical care. So I am resorting to begging from strangers to help us get what she needs. We know that our end goal is largely unattainable, but if we can generate ANYTHING to put toward getting her vehicle and improving her life, it will be worth the effort.

Thank you so much for any support you can give.

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