One in 18,000 males has a form of a genetic disease called Adrenoleukodystrophy. But for young boys, it is almost always fatal.

It's an inherited disorder, carried by the mother, that leads to progressive brain damage, failure of the adrenal glands and eventually death.

There has been some success with bone marrow transplants and that is what Chrissy Vanloon is hoping will save her son's life.

Adrenoleukodystrophy, or ALD, runs in Chrissy's family. When she was only 10 years old she watched her little brother, Michael, start to show symptoms of ALD.

"He was in kindergarten and he was having seeing problems," Chrissy remembers.

That was the beginning of it. But doctors didn't know what they were dealing with. It wasn't long before more symptoms started to show.

"Then just one day, he started acting like a baby and they thought it was a behavior but it wasn't. His brain was going so fast...within a couple of days, he was in a crib in our living room, deaf, blind, with a stomach tube," Chrissy says.

Michael only survived a few months in that state.

"Unfortunately, for some reason, they let me see him in a black bag and they took him out of the kitchen. It was horrible."

That image haunts Chrissy. She can't imagine going through that again with her 4-year-old little boy, Ryan. A recent MRI of Ryan's brain has just started to show symptoms of ALD.

"This past one came back and the blood brain barrier is being attacked. The myelin sheath is being destroyed."

Chrissy knew she was a carrier of the disease. It's linked to her X chromosome and an amniocentesis during her pregnancy showed that Ryan had ALD.

"I grieved for him when I was pregnant. As soon as I got the news it was just overwhelming," Chrissy says.

But there was hope that there would be a cure for Ryan. She's been getting MRIs for Ryan every six months since he was two, so they could catch it early. And now that they are seeing symptoms, treatment will begin.

"He has to go through intensive chemotherapy to destroy everything in his body."

And he'll need a bone marrow transplant. Chrissy is hoping Ryan's twin sister, Bella, will be a match. But there is concern that Bella is also a carrier of ALD.

"They're trying to figure out if it's still OK for her to donate because it's not documented anywhere, there's one case that they know about," Chrissy says.

Chrissy herself has some symptoms of the disease as a carrier. In females, the gene mutation is called Adrenomyeloneuropathy.

"We have trouble walking, we fall down a lot. Something is going on in the legs that makes it hard for us," Chrissy says.
And those symptoms are what caused her to lose her job as a CNA. Her husband drives a truck locally, but money is tight and there's no health insurance. She's trying for Medicaid to help pay for the medical expenses, and the bone marrow transplant.
"This is a $500,000 dollar procedure."

And while the weight of the world is on Chrissy's shoulders as she deals with this diagnosis, she has even more to worry about: her house.

"We got this as a starter house, we got a pretty good deal on it. We figured we would get to fix stuff up over the next few years."

But the carpets all need to be replaced, the walls repainted and now it's doctor's orders.

"We have to be in a sterile environment and we aren't right now."

Chrissy is just doing all she can to keep it all together.

"You put on a face, but at the end of the day it's just devastating."

If you'd like to help the Vanloon's, they've set up an account to take donations for Ryan's care. You can donate at any ENT Credit Union.

Memorial acct. for Ryan M. Stauffer

acct. # 515269

For more information on ALD, click on the link below.