Jacob Gladbach, 14, likes football, his family's pet cats and playing games on his Xbox, and he said he doesn't like attention. Jacob's gotten a lot of attention lately, though, since his diagnosis with a genetic disease that's rallied people to help him and his family prepare for the fight they have ahead.
Jacob's dad, Stephen, said their family's been "very surprised, impressed and humbled" by the offers of support they've been extended and received - money, cards, offers to mow their yard, to name a few - since his son was diagnosed with ALD last month.
Jacob said strangers have come up and introduced themselves to him, and the count of his social media followers has multiplied.
"I appreciate the support. I hate the attention," he said Monday of how he feels about it all. He added he does think it's cool that his family is also raising awareness for ALD and bone marrow donorship through sharing his story, but he's also tired - from the disease and not getting a lot of sleep.
ALD stands for adrenoleukodystrophy, and it affects about one of every 18,000 people - boys and men most severely, according to The Stop ALD Foundation.
As much as Jacob wants to - he wore a Helias Catholic High School football t-shirt Monday afternoon - he's been advised not to play football, and he can't work out with free weights because of the risk he'll have a seizure while he's lifting. He has gotten an invite to watch the University of Missouri-Columbia's team lift.
He had planned on being on the football team at Helias, where he would have gone this fall for his freshman year, coming from St. Peter Interparish School. However, an episode of tunnel vision one morning before school eventually led doctors to order imaging scans of his brain, and those scans in turn led to the diagnosis of ALD that's set out a different journey ahead for Jacob.
The basic mechanism of ALD is that a certain inherited genetic mutation causes the body to not produce a protein that normally breaks down a certain metabolic by-product.
With no protein to break it down, the substance builds up around the central nervous system - the brain and spinal cord. An immune response is triggered once enough builds up in those areas, but the body in the process also ends up attacking the sheaths around its own nerve cells.
Without that sheath, nerve cells in the brain and that control muscles start to fail, which means mental and physical deterioration that ends in a vegetative state or death in about five years. ALD often manifests itself in boys younger than the age of 10, but an adult form can begin showing symptoms in men in their 20s and 30s. Jacob is somewhere in the middle - early onset, late symptoms.
Stephen said Missouri doesn't test newborns for the disease. Other states have developed their own tests, as there's no Food and Drug Administration-approved one.
A bone marrow transplant can stop the progress of ALD, but whether it's successful, a transplant comes with its own set of risks, too. Chemotherapy has to come before a transplant to kill off the body's immune system and give the transplant the best chance to be accepted, but without a working immune system, a person is vulnerable to infections.
"We're going to take the odds and fight," Jacob's mom, Christy, said.
She said Jacob is waiting on a bone marrow donor. His two sisters are being tested first to see if they're matches and if they're also free of the mutation that causes ALD. The disease doesn't affect women who do have the mutation as severely.
Once a donor is found and his treatment can proceed, Jacob will have to spend six weeks in isolation at St. Louis Children's Hospital post-transplant - that's after he's been determined to be healthy enough for chemo and then does the chemo.
For the three months after his six weeks of isolation, Christy explained he'll have to live close to St. Louis.
"We'll have to take turns coming back and working," she said.
She's a nurse at JCMG, and Stephen's the Microbiology Unit Chief at the Missouri State Public Health Laboratory.
They do have insurance, but they have no idea yet of what the co-pays will look like, or what might not be covered.
For now, the family is doing two things - collecting as much money as they can in preparation for the medical, travel and lodging expenses ahead, and trying to make as many good memories with their son as they can.
The community is also rallying to support them.
As of Monday night, 67 people in 10 days had raised $7,140 of a $50,000 goal on "Jacobs Fight Against ALD" GoFundMe page at gofundme.com/jacobs-fight-against-ald.
Christy said GoFundMe is convenient, but the site does take for itself a percentage of what's contributed.
There's a "Benefit for Jacob Gladbach" account that's been established at Central Bank.
"There's a group of moms that are doing a little T-shirt that it seems is working out pretty good," Jen Cassmeyer said last week of efforts among St. Peter and Helias families to print shirts as a fundraiser for the Gladbachs. "It kind of just started in the parking lot," Cassmeyer added.
Cassmeyer, whose son has been a classmate and teammate of Jacob, said whether other families share a connection like that with Jacob's, "they're still part of a faith community" and need the support.
She hopes that for students the T-shirts will be reminders to "just say a little prayer and to keep that memory going for them," to support and be on the journey with Jacob as he fights ALD.
Hundreds of shirts have been ordered so far - at $10 a piece, Cassmeyer said.
Lisa Distler is a point of contact for shirt sales, and she can be reached at 573-418-5437 or [email protected].
A benefit concert is also planned for Friday night at The Bridge. Stephen's a bass guitarist in the band "Lucky," and they'll be playing, too, once the sun goes down, according to The Bridge on its Facebook page. Donations for Jacob will be taken at the door.
Christy said they'll also be handing out informational flyers on how to donate bone marrow.
Once in the hospital, Jacob hopes he'll have his Xbox with him to keep him busy. His cat, Butters, is probably a no-go, but Christy said he'll get a pet bird once he's out - if he keeps fighting and doesn't give up.