Morgantown family fights for life-saving funds

Published: Sep. 21, 2016 at 4:40 PM EDT
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This is Alexander Johnson from over a year ago and here's a look at him now. He has almost doubled his size, and just hit a milestone of turning two, something doctors said was almost impossible.

"They literally were like six months, love him for six months because that is all you have. As a mother when you hear that you think what am I going to do? After six months that is it. And then when a year came they were like five percent. It's almost impossible for a child with his condition to get to two, it's not going to happen. And everyone in the house and everyone he is surrounded by has hope," said Autum Johnson, Alexander's mother.

But the journey has not been easy. At five weeks old, Alexander was diagnosed with Spinal Muscular Atrophy (SMA) and ever since, the family has been fighting for medicine to save his life.

But a day before his second birthday, the family received the gift they have been waiting for.

"They are opening up an EAP. That's an expanded access program. This medicine is not approved yet. It has just went to the FDA for approval, but the EPA is open for type one's like Alexander," said Johnson.

The only problem is covering the cost. To receive the procedure, Alexander has to travel out of state and insurance will not cover it.

"There is no hope without the drug if that doesn't sound sad enough. Like I have said before and I will say it again, I would much rather ask people to donate to my son's treatment than to have to turn around and ask them for money for a funeral," said Johnson.

The medicine is not a cure, but it will make him stronger and slow the progression of the disease.

"It's an individual case by case kind of thing, but it does work. It does stop the progression of the disease and that's what we are looking for," said Johnson.

And now that hope is in sight, the family is hoping others will help them out in the fight.

"Anything at this point helps. Anything that can possibly be done to help us raise the money so my son can live," said Johnson.

To donate to Alexander's cause, click on the You Caring link in the Related Links section to your right.

You can also visit Alexander's Facebook page, Prayers for Alexander, to follow and keep up with his progress.