Makean is 15 years old and has been diagnosed with a progressive rare disease called Leukoencephalopathy with a Mitochondrial disorder. There is no cure.
Leukoencephalopathy is in Makean's case a metabolic disorder that causes damage to the myelin, which is the covering that protects nerves in the white matter of the brain and also the spinal cord.
Mitochondria is found in every cell of the body except red blood cells. It's purpose is to manage energy for the body including all major organs (like heart, lungs,& liver), also digestive systems, and even how muscles work. Mitochondria is also in the brain.
A big part of his treatment plan is to stay active and exercise to the best of his ability. He began physical therapy the summer of 2011 and has been walking with fore arm crutches since February 2012. We searched for a long time to find medical answers, but since the disease is so rare not many doctors knew where to start.
His physical symptoms began with his eyesight at age 8. The exam indicated something very different that the doctor had never seen before. At that time we had no insurance and could not get further help with any specialist.
It wasn't until moving home to Iowa that we were able to get the medical help that he needed. That was 2008. Right away we started going to specialist and this continued with his eyes for a few years.
Then at age 12, he began to have problems with his gait. It just kept getting worse and he fell quite a lot. But no one knew the answers as to why. He had undergone lots of tests including several brain MRI's since age 9, extensive eye tests, many blood tests to rule out well known diseases, several bouts of genetic testing, and urine tests. Doctors finally believed that he had a rare disease called Leukodystrophy based on the MRI's.
Recently though, in February of this year, there was enough evidence in a genetic test that supported a finding of a rare disorder called Mitochondrial Disease.
Basically what this means is that Makean's body has trouble managing energy. And for the time being it has only effected his legs. This is why he needs to stay mobile and keep his leg muscles strong.
Makean used to be extremely active before this disease came upon him. He was always running and riding his bike. He hasn't been on his bike but only once last summer and could not make it far. This new Terra Trike is so awesome and he tried it out at our local bike shop. There is a motorized trailer that is attached behind the bike so when he gets tired he can use the throttle and it will push him! This is perfect for Makean because it will keep him mobile and independent. We used to go on walks and ride our bikes together. We would look at bugs, birds, animals, trees and plants. I really miss that. I'm hoping that soon we can enjoy life once again in the ways that we used to. He is so excited about it! I'm sure he is dreaming of the days to come when he can ride his bike and enjoy the things that he loves most!
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