Second update posted 10/8/18
It takes 38 muscles to write this sentence. How easy it is to take our muscles for granted -- when we get out of bed in the morning, laugh with our friends, kiss a loved one, wave goodbye; things no one has to think about doing unless they have Inclusion Body Myositis. IBM is not as well-known as ALS but is just as debilitating. It is a progressive disease where the body eats away at the muscles until the victim can barely move. Hardly able to walk, work, worship; this is the life of John Rybak.
John was a proud American, devout Christian, loving family member, and skilled photographer, before the disease started to slowly steal his ability to move. Not having the ability to walk keeps him from seeing his family, going into the office, and worshiping at his church. Something as necessary as going to the doctor has become extremely difficult for him to do.
He’s alive but not truly living, no longer independent and not mobile. Confined to the same 40 square feet every single day, robbed of passions, company and experiences, John's disease has finally progressed enough for him to qualify for a fully-mobile, paraplegic wheelchair.
"Behind the Camera" a short film about John by Carly Kramer
John's story and his family's plea for help
Inclusion-Body Myositis (IBM) is an autoimmune disease that ravages the person's body, slowly destroying the muscles, leaving them atrophied and shrunk beyond use. John noticed a weakness in his legs several years ago and fell down quite a few times before going to the doctor. John was diagnosed with Inclusion-Body Myositis after a biopsy confirmed this rare muscle disease was the cause of the weakness and falling episodes.
In 2013, he started a long list of various treatments to try to stop the disease. After 18 months, John was not getting any better than he was prior to the treatments; in fact, he was weakened further by the medications designed to help him.
After driving off the road and temporarily losing control of his car in early 2015, John decided to stop driving. Thankfully, he was able to start working remotely from home instead of driving to the office. John still works each day from a special recliner designed to help him sit up during the work day. Holding his body up by himself has become more and more difficult and painful. John is only able to work a 5-hour work day instead of the full 8 he was able to do at the beginning of 2018.
For years, John has walked using two canes to aid him; however, the muscle loss in his legs has now slowed him down to where even walking from his bedroom to the bathroom has become difficult. His body strength has diminished to the point that if he falls, he cannot sit or stand on his own. The local fire department had to be called earlier this year after John lost his balance and fell into the doorway causing him to fall face first to the floor. It took six paramedics to aid him.
John lives with his sister and her family in Florida since he requires daily assistance. He only leaves the house now to visit his doctors and occasionally attend church. On the rare occasions he leaves the house, he requires assistance to walk the short distance from the house to the vehicle and requires help lifting his legs into the vehicle. Walking has become very laborious and dangerous since very few sidewalks are completely flat.
A fully powered electric wheelchair is needed to allow John to function in and out of the house. As this disease further continues to weaken his body, "the worst" is being planned for with a chair of this type. The wheelchair (pictured below) will do more for John than just allow him to visit the doctors and church more easily. The wheelchair will allow him to continue to take care of himself in the house and enjoy a quality of life everyone deserves, including something as simple as bringing his morning coffee to his desk.
Insurance will cover 80 percent of the wheelchair's cost, leaving John with 20 percent of the balance. Even though a seat lift function on the chair is medically necessary for John to get in or out of the chair, the additional cost is not covered making John's portion of the chair's cost even more. Also, in order to transport the wheelchair when John does leave the house, a specialized trailer (pictured below) is also required due to the chair's weight and size, causing John's expenses to be more than he can afford.
While John has some savings and his family intends to help as much as they can, more aid is needed to meet the remaining $12,000 balance.
Immediate funding for John's portion is required once the chair is approved by the insurance company. The chair and trailer cannot be ordered until funding has been received.
The photos below show the distanced from the car to the far office door (with the mat in front of it) John needs to walk just to visit his primary care physician. It takes him approximately 15 minutes with two breaks to catch his breath to walk a distance that would take someone else approximately 1 minute to walk. Because of the size of the curbs on the building and the fact that John can only lift his leg approximately 1 inch, we are unable to drop him off closer to the office door.
We are attempting to raise the funds for the chair as soon as possible. John's primary physician, occupational therapist and neurologist have joined together to show the insurance company this chair is medically necessary for him. The claim has been submitted to his insurance company for approval; however, until John has the full amount due, the order for his custom-built chair and trailer cannot be placed.
We petition you to donate towards John's portion of the expenses for the chair, lift and trailer that are so badly needed. John is still in good spirits and realizes the disease will continue to reduce his abilities each day, but he is not giving up or giving in to this disease.
Thank you for taking the time to read our plea. Please share this cause with your friends and family and spread our plea for help.
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- Joseph Raoul III
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