Tuesday, September 25, 2018
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A wish among stars

Jackson Reamer at Mile High

With football season upon us, at least preseason games, many fans get revved up, but one young fan’s excitement is taking him not only behind the scenes to a game, but to personally meet his favorite team, the Denver Broncos.
Jackson Reamer was granted the weekend trip as part of the Make A Wish Foundation’s outreach to help kids with chronic illnesses and to give them a wonderful experience to focus on. Although most people associate the program with terminal illness, the foundation is trying to change that image by granting wishes to kids who struggle with ongoing physical challenges. So don’t worry, Jackson isn’t going anywhere except to a riveting game this weekend and he’s literally squealing with excitement about it.
His mother Megan explains. “He loves football and gets really excited when he watches the Broncos. He starts laughing and giggling and screaming. His doctor at Children’s Hospital suggested that we make the request to Make A Wish. It’s a way for kids to escape their everyday reality,” she says of the challenges Jackson has faced since the age of two.
Jackson and his parents are preparing for a grueling week of testing at The National institute of Health (NIH) in Bethesda, Md. in mid-September. He’s been accepted into their ground breaking Undiagnosed Disease Program.
Last winter the Crested Butte News featured Jackson’s story and how his family restructured their lives and their diets in dealing with his ongoing health issues and in the process developed a scrumptious business of organic, wholesome potato chips called Jackson’s Honest Chips.
Jackson was born healthy and by two years of age was doing all the exploratory things toddlers do—walking and talking and laughing at those mysteries that only his age group can see.
But something inexplicable happened, Jackson started to develop some weakness in his feet. Over the course of the next 18 months the weakness spread up his small body and the toddler gradually lost gross and fine motor skills.
Jackson is now 12 and the cause of his motor ability failure is still undiagnosed, even though he’s gone through every test possible at specialized clinics all over the United States. He cycled through the specialists at Children’s Hospital, each one giving the same mystified response that they’ve never had a case like this.
But NIH’s program is way beyond anything even the Mayo Clinic can do for him in that they’re the only place in America that performs some very specific tests. Being accepted into their program means that Jackson is a unique and rare case, and his testing and stay is entirely funded by NIH.
Having seen the reports and images of Jackson’s lifelong testing, NIH already has some ideas and two different avenues they may want to pursue and discuss with the family after Jackson undergoes their extensive testing.
Megan says, “It will be a totally different category of care than he’s had anywhere else. Their research and clinical resources are leading edge. They are the pioneering group that is spearheading clinic trials for cancer, uncovering genetic disorders. They’ll do genetic sequencing and whole genome sequencing.”
Megan notes that all Jackson’s siblings and his parents had to give blood so NIH could then parse it out and look for a variance in Jackson’s sequence, “and then compare it to any variant that’s in ours. He’s never had that level of testing. It’s like a fresh look at Jackson and what could possibly be going on with him. Our expectation is that they can look at him and troubleshoot on a level that hasn’t been approached before.”
But Jackson’s own expectations are more along the lines that the Broncos will win their preseason game against the Rams this weekend. The family heads up to Denver on Thursday and on Friday morning Jackson and his family will get a private tour of Sports Authority Field at Mile High Stadium. Afterwards they’ll be treated to lunch at the Hard Rock Café. The Ritz Carlton is hosting their celebrity stay and the family was told to expect special surprises the hotel has lined up.
“The Make A Wish person said the Ritz is rolling out the red carpet for Jackson. On Saturday he gets to go on the field and meet the Bronco players and get autographs and watch the pregame activities from the field,” Megan says.
Is Jackson psyched? Megan laughs, “We can’t even talk about it because he gets so excited when we tell him we’re going to see the Broncos. They’re doing a really wonderful weekend for him and they’ve included the whole family.”

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