The 2-year-old is full of joy, but he lives with a rare disorder that has a frightening name. It's called adrenoleukodystrophy. There is no cure, and most folks don't know much about it.
Asher's mom, Cris Fleming, hopes that changes.
Foundation supporters Ann Moser and the late Dr. Hugo Moser pledged to contribute $165,000 to the fund if others raise at least that much by July 1. Eventually, all the income from the endowment will go to research.
And eventually, maybe someone will learn something that helps Asher.
That's what Fleming and Bloxom hope.
When Fleming learned her baby boy had the metabolic disorder that could shorten his life, she cried a lot. ALD can lead to neurological disability and death, and Fleming watched her father struggle through its harrowing symptoms. She saw his skin break down. She watched him fight to keep his independence and instead get shuffled to various nursing homes.
She watched him succumb to a multitude of ailments brought on by ALD, too. Donald Fleming died in August at age 49.
ALD is an inherited disease, but Fleming didn't know enough about it to think it could affect her baby. She said there might have been a time she didn't really want to know, too.
Either way, when Asher was 3 months old, she started thinking about it. She figured she'd better take him to the doctor for a test; the results transformed the family's life. Asher tested positive. He exhibited no symptoms - and he still doesn't - but that can change in a heartbeat.
“It'll be a constant worry for the rest of our lives,” Fleming said.
Ever since that trip to the doctor, both parents' lives have been dedicated to keeping Asher healthy. Fleming reads everything about ALD she can get her hands on. And Fleming and Bloxom focus on treatments they hope prevent the condition's onset.
Researchers believe ALD might be caused by the body's inability to digest fat. The fat builds up in the brain and destroys the ends of nerves. Sometimes, the adrenal gland fails, too.
So Fleming and Bloxom work against those outcomes. They feed Asher special oils. They closely monitor his fat intake. They take him to the doctor every month for a blood test and every year to a research center in Baltimore.
They juggle all this and their jobs, too. Fleming is a social worker and Bloxom tends and manages a bar. It's a good thing they have jobs because the medical bills only grow, though Fleming said the hefty expenses aren't the worst part.
“Right now, the hardest part is not knowing,” Fleming said.
She means not knowing if or when Asher will show symptoms. She feels lucky that her son is a bright, well-behaved child, but sometimes, anxiety bears down on her and she wants things to be different.
“Jeez. Can't we have our break?”
Fleming said it isn't her way to ask for help or open her private world to the public. She fears people will feel sorry for her family or treat Asher differently. But she's setting aside her pride.
She's risking all that because there's a chance that Asher and others with ALD will live easier lives if Montanans help. Fleming believes they will.
She wants people to believe that a breakthrough is possible, and she wants that break.
Especially, she wants Asher to live a long, good life.
Reporter Keila Szpaller can be reached at 523-5262 or at Keila.Szpaller@missoulian.com
Help find a cure
Supporters of the United Leukodystrophy Foundation plan to donate $165,000 toward an endowment if the general public can raise the same amount by July 1.
The fundraising goal is a $500,000 endowment, and the income will go to researching adrenoleukodystrophy, a rare metabolic disorder.
To donate, go to www.ulf.org or make checks payable to:
Challenge Grant
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
Mention Asher Bloxom in your donation so his parents can send you a thank-you note. For more information about the fundraiser or the condition, visit www.ulf.org
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