Bear Paw Elevator
Donation protected
Barrett Paul DeRubeis-McGinnis otherwise known to everyone who knows him as “Bear”! Bear is a typical 13 year old teen, except for the fact he has a very rare Muscular Dystrophy, which is Congenital Myasthenic Syndrome (CMS). CMS is characterized by weakness and fatigue resulting from problems at the neuromuscular junction— the place where nerve and muscle cells meet.
Bear literally never asks for help, even though he struggles on a daily basis with muscle weakness brought on with any exertion, neck weakness which he always has, some breathing difficulties, and ability to walk, he just “tires out” quickly. He uses a wheelchair at school and at home he tries to get around himself, but with a lot of struggle.
But now Bear is asking for your help, he needs an elevator! And here is why……
Last year he endured a massive surgery, he basically had a new spine put in, 2 Rods and 19 Screws. He is straighter and his spine is not crushing his lung as much, but his neck is a little worst and he has daily pain.
Now we have moved to a farm, with COVID19, this decision seemed like an easy one, as Bear’s lungs are compromised, and we thought this would give him just a little more protection. For some reason, he is weaker, but we will not know if he will get progressively worse or not as this disease is unpredictable.
The only solution is to install an elevator because a chairlift will not work as he will need his wheelchair once he gets to his bedroom or to the basement. We unfortunately, cannot manage this cost, and with just buying the home cannot take out anymore loans. Also, we are having to pay out of pocket for other handicapped accessible items that we need to install for Bear.
Please help Bear get around his new home just like any other teen would want to do. As you all remember those times when you just wanted to escape to your room or have your friends over without your parents hanging around. He knows he is different, but this would get him One Step Closer to feeling like an Everyday Average Teenager!!
Bear literally never asks for help, even though he struggles on a daily basis with muscle weakness brought on with any exertion, neck weakness which he always has, some breathing difficulties, and ability to walk, he just “tires out” quickly. He uses a wheelchair at school and at home he tries to get around himself, but with a lot of struggle.
But now Bear is asking for your help, he needs an elevator! And here is why……
Last year he endured a massive surgery, he basically had a new spine put in, 2 Rods and 19 Screws. He is straighter and his spine is not crushing his lung as much, but his neck is a little worst and he has daily pain.
Now we have moved to a farm, with COVID19, this decision seemed like an easy one, as Bear’s lungs are compromised, and we thought this would give him just a little more protection. For some reason, he is weaker, but we will not know if he will get progressively worse or not as this disease is unpredictable.
The only solution is to install an elevator because a chairlift will not work as he will need his wheelchair once he gets to his bedroom or to the basement. We unfortunately, cannot manage this cost, and with just buying the home cannot take out anymore loans. Also, we are having to pay out of pocket for other handicapped accessible items that we need to install for Bear.
Please help Bear get around his new home just like any other teen would want to do. As you all remember those times when you just wanted to escape to your room or have your friends over without your parents hanging around. He knows he is different, but this would get him One Step Closer to feeling like an Everyday Average Teenager!!
Organizer
Judy McGinnis
Organizer
Pittsburgh, PA