Family collecting birthday, Christmas cards for teen battling rare disease

- A Downriver family is collecting birthday and Christmas cards for a brave teen battling a rare illness.

Nathan Kelley was a normal healthy boy three years ago when he suddenly began to lose his hearing, according to his sister Breanna Kelley. She and her family thought he would struggle with hearing the rest of his life, but had no idea what was yet to come. As she put it, "(That is) no comparison to the nightmare he is living now." 

Doctors diagnosed Nathan with mitochondrial encephalomyopathy, lactic acidosis and stroke like episodes, or MELAS as it is commonly called. The disease is rare, but one of the more common of a series of conditions known collectively as mitochondrial diseases. Overall, one in 4,000 people has some type of mitochondrial disease.

Breanna said that hearing aids won't help him, because doctors said it wasn't his hearing that was the problem.

"It was his brain that could not comprehend what you were saying," she said. 

A year ago Nathan had his first seizure, which is when Breanna says the nightmare began. 

"Hospital after hospital stay, and test after test," she said.  "Seizure medication could not stop his seizures and each big episode he came back from he wasn't the same person he was before. Each one he had we would get the MRI and there would be even more damage done do his brain. 

"Along with his hearing, his eye sight began to change, he has a hard time speaking and putting things 'together.' It takes him awhile to comprehend things and his memory is starting to take effect."

There is no known cure for MELAS and no treatment other than his cocktail of medications he takes daily. His 18th birthday is about a week before Christmas. His family is worried it might be his last celebration.

His most recent episode was severe and the family says at this point "almost his entire brain is deteriorated, nothing but a small corner is left," Breanna said.

"I've watched my poor, young, 16-year-old brother go from a fun, loving, happy young man to a young man fighting for his life," Breanna said.

MELAS is a hereditary disease and other children in the family may have it but it has not shown up yet. Nathan's sister says that she could never be as brave as he is in this situation. 

"He is not going down without a fight and I know he will fight this until his very last breath," Breanna said. "I just want some light shined on this horrible disease, I want more people to know about it, I want more studies to be done, and I want a cure to be found." 

My biggest goal for his last days may that be years or months, is to show him just how love and cared for he is and give him as much support as I possibly can."

Breanna's wish is for people will help brighten Nathan's day with a birthday or Christmas card, mailed to him at 2165 Richmond Ave., Lincoln Park, MI 48146.

She said he is a big football fan and loves the Lions. The family also has a GoFundMe account. If you would like to donate, go to https://www.gofundme.com/unygn9-fighting-for-nathan

“My biggest goal for his last days, may that be years or months, is to show him just how loved and cared for he is and give him as much support as I possibly can,” she said.
 

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