Molly's Kids: Impossible to think, reality is real for this woma - | WBTV Charlotte

Molly's Kids: Impossible to think, reality is real for this woman in York County

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YORK COUNTY, SC (WBTV) -

I've been trying to wrap my head around Angel Clark’s situation. It doesn’t make sense.

She asks you read this through to understand things like this do happen, and are happening in your backyard.

Angel’s 7-year-old son, Jaxon, pulled the wildly unlucky straw to be born with a rare, rare disease.

Only 2,000 boys in the world have it; 500 are in the United States. Then, six weeks ago, her grandson was born with it, too. The exact same condition.

Again, only 500 cases in the U.S., and two live in Angel's house.

“Jaxon was diagnosed with Hunter Syndrome at the age of four," Angel wrote from York County. “I was told his life would be short and at the end, it would be miserable. That’s what I was told. My world crumbled.”

If Hunter Syndrome sounds familiar, a couple other #MollysKids live with this debilitating, incurable genetic condition. It only affects young boys. It means the child's cellular waste builds up and causes a loss of functions.

Or, think of it like this:

All of our cells make garbage. But most of us have garbage trucks called enzymes that take that garbage out. Because we have trucks, we function cleanly.

But kids with Hunter Syndrome don’t have trucks, so the garbage stores up in their bodies causing cognitive and physical problems until the body can no longer function.

Life expectancy is early teens. At best.

Three years ago, after getting this terrible news, Angel started weekly infusions and constant doctor visits for Jaxon.

If you ask her, that’s where she’ll tell you they still stand.

“I gloss over the reality of our lives when people ask,” she said. “No one wants the real truth. The real truth is we’ve had tons of procedures, tubes in his ears, tonsils removed (twice!), and his adenoids taken out. We’ve had a carpal tunnel release on both hands, hearing aids, constant x-rays, MRI’s, and right now you can see buildup on his brain. But I usually just tell people, ‘weekly infusions and doctor visits’. It’s too much for most to handle.”

Now fast forward to April of this year. Angel’s grandson, Anthony, is born.

“The moment they said, ‘It’s a boy,’ my heart sank,” she said. “He was supposed to be a girl and I knew now there was a chance he’d also have Hunters.”

Three weeks later, Anthony was diagnosed.

“Doctors immediately started talking about putting a port in his tiny 18-day-old body to get infusions going,” she said. “Then there was discussion of bone marrow transplants. Everything around me was spinning. I was holding my precious grandson and seeing his happy eyes and demeanor and knew it was all going to be hard for him. My world was shattering all over again.”

Which is why I can’t get my head around Angel’s story.

Think about all you just read.

Angel has two beautiful boys in her house, her oldest daughter, Anthony’s mom, lives with her, both on shortened lives.
 

She says Jaxon is full of energy and joy. That he smiles and laughs with a contagiousness and loves to play outside and ride his 4-wheeler.

Yet, she can see the physical effects taking a toll. He has already lost many of his words and she sees him slowing.

Instead of being able to fix it, Angel says she’s forced to simply soak up the seconds.

“All I can do is hope for a cure,” she said. “There’s a clinical trial in the works, but Jaxon didn’t get accepted to try that, so I’m left hoping the FDA approves a full trial for all kids to have access. I’m hoping the FDA can do that in time to save Anthony. I really do have hope for my grandson. I hope he never has to go through what my son handled. Hope is what I’m left to have.”

Okay. If you’re still reading, and I hope you are, take a breath. I had to while writing this. Angel says everything in a matter-of-fact manner, but it’s a lot of heaviness.

If you follow our #MollysKids closely, you also might know about the clinical trial she referenced. It is being pushed by bold and fantastic parents in south Charlotte whose son, Finn Muedder, also lives with Hunter Syndrome.

His family is driven beyond driven to raise oodles of money (goal is over two million) to fund this trial and get it into the hands of everyone.

They want to do it for Finn, but also for other boys dealt the same hand. Boys like Jaxon and Anthony.

“Our future scares us,” Angel says. “I don’t talk much about it, but here I am writing you everything. I just know it’s a matter of time before my son loses his ability to walk and eat. All his organs will start to have problems. My biggest fear is that one day he will look at me and not know who I am.”

Hey U.S. Food and Drug Administration, get this on your radar.

And hey to everyone else, if you haven’t already, spread the word on Hunter Syndrome. Share this story. Tell a friend. It’s real.

These are now the third and fourth boys in the Charlotte-area we’ve heard of living with this horrific situation.

You can also read more about the efforts to get the clinical trial funded through the Project Alive Facebook page, started by the Muedders in Charlotte. It’s super well-run with lots of impact.

“Thanks for listening,” Angel said at the end of her note. “I have big dreams my daughter will never be in my shoes watching her son decline. I have great hope my baby grandson will run long after I can’t anymore.”

**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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