Matthew Needs $2,500 for Special Bike that Could Save his Life

Hello, my name is Philip.

I am a legal guardian for my youngest sibling, Matthew, who has a syndrome that causes him to constantly feel hungry no matter how much he eats or how often.

It's called Prader-Willi Syndrome (PWS) and comes with a laundry list of other physical and emotional challenges. Although he is on a strict diet, his metabolism is less than half that of a healthy individual, making it a challenge to maintain a healthy weight.

He is always hungry, but there are times when he feels he is actually starving, causing him to use any means available to him to obtain food, like raiding the refrigerator and pantry, which were fitted with locks many years ago. When he was much younger, he looked for ways to get into our neighbors' refrigerators and pantries. I've caught him eating dog food and various items out of the garbage can over the years.

The good news is that through the efforts of the national Prader-Willi Syndrome Association (www.pwsusa.org) and its members, a drug has been developed specifically with PWS in mind. The FDA has approved it, and we are currently awaiting its distribution in Idaho. It is our prayer that it will take away, or at the least decrease, his hunger.

People with PWS often develop lymphedema, endocrine insufficiency, cardiac issues and congestive heart failure.

Even though Matthew looks about 11 or 12, he is actually 41-years-old, a curious characteristic observed in many people with PWS. Due to a difficult birth, he had the oxygen to his brain obstructed for a significant amount of time and, as a result, has the cognitive ability of about a six-year-old.

THE CRUX:

Matthew seems to end up in the hospital every few years with a different health issue.

The latest was a couple of weeks ago when his oxygen level plummeted due to significant weight gain over the last couple of years.

Because the pain tolerance in people with PWS is high, we did not know he was having hip trouble. Matthew loves to exercise, but when he started slowing down and gaining weight, we knew something was wrong.

It turns out his right hip needs to be replaced and his particular issue has been identified as a congenital problem. However, the surgeon won't perform the procedure until he loses about 40 pounds, which requires exercise. Matthew can't exercise because he is in too much pain. He is currently on oxygen and must wear a BiPAP at night. If he could lose the weight and get his hip replaced, we (my parents and I) know that he would return to a healthier condition and might not need to be on constant oxygen in the future.

THE "ALINKER"

The only answer we see at this point is a product I recently discovered online. It's called the "Alinker" walking bike. (You can find information about it here: www.thealinker.com) Yes, it's an unusual name, and looks a little strange, but is exactly what we need to get Matthew moving again without pain. It's like sitting on a stool or chair, but there is no pressure on joints.

THE COST

An Alinker is about $2,500. Neither my parents nor I can afford to buy him one. That's why I've created this GoFundMe campaign.

Despite the challenges he faces, we believe that combined with the new FDA-approved PWS drug, Matthew could have a bright future.

My family and I thank you for your time and consideration.

Phil