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Macleod youth requires surgery at U.S. hospital

Bradyn Boot

Bradyn Boot, 11, will travel to Cincinnati this summer for surgery to relieve pain caused by intestinal neuronal dysplasia. A spaghetti supper and auction Friday will help cover the family’s expenses.

Fort Macleod residents will rally Friday, June 21 to support an 11-year-old boy who requires special treatment at a U.S. hospital.
A spaghetti dinner fund-raiser and auction gets under way at 6 p.m. at Fort Macleod and District Community Hall in support of Bradyn Boot and his family.
Bradyn, a Grade 6 student at G.R. Davis school, has intestinal neuronal dysplasia, a disease of the intestine that affects one in 3,000 children and adults.
Jaime and Maurice Boot are delighted to have found a way to ease their son’s pain after a seven-year search.
“We are very optimistic,” Jaime Boot said. “I’ve talked to the doctors down there and they say, ‘Yep, we can help your kid’.”
Braydn will have to take medication the rest of his life following the surgery at the hospital in Cincinnati, but the pain will be gone.
“His quality of life will be so, so much better, that he can actually live normal and not have the pain.”
People with intestinal neuronal dysplasia have a problem with the motor neurons that lead to the intestine, inhibiting this process and thus preventing digestion.
The surgery in Cincinnati will cost the Boots $30,000 to $40,000 and so far the provincial government will not provide financial assistance.
“It’s not cheap to get surgery done in the States, that’s for sure,” Jaime said.
The Boots had been working since Bradyn was four to get a diagnosis but it was not forthcoming.
“Three years ago we got really mad and drove to the children’s hospital in the middle of the night,” Jaime said. “We got in to see the specialist right away.”
Five specialists examined Braydn and ordered biopsies that showed he had intestinal neuronal dysplasia and a tethered spinal cord.
Bradyn underwent surgery on his spine last November to address that problem.
The Boots weren’t satisfied with the doctors’ suggestion of putting a tube in Bradyn and leaving it there for 11 years to deal with the intestinal neuronal dysplasia.
They discovered the only colorectal hospital in the U.S., where surgery is available to ease Bradyn’s pain.
“This hospital in the States, they have different surgeries to increase the quality of life by 95 per cent,” Jaime said. “He won’t have tubes or anything.”
Although Bradyn copes well with the disease, his parents are anxious to get their son long-term relief.
“He does pretty good,” Jaime said. “Bradyn doesn’t know any different. This is all he knows so in a way it’s kind of normal. To live with pain is normal for him.”
For years when the pain got too bad the Boots took Bradyn to hospital, but the procedures there provide relief for just two weeks.
“We don’t admit him any more because it’s pure torture,” Jaime said.
In addition to the pain it causes intestinal neuronal dysplasia affects Bradyn’s quality of life in other ways.
“It decreases how he digests his nutrients so he constantly craves food,” Jaime explained. “His energy levels of course are lower because when you’re constantly full and nothing moves you constantly have those toxins in you.”
Due to the expense, only Jaime will accompany Bradyn to Cincinnati, with the need for hotel accommodation and meals adding to the costs.
“They have a Ronald McDonald House but it is booked like no tomorrow,” Jaime said.
That makes the fund-raiser Friday at Holy Cross Hall that much more important.
Donna Friesen and Jaime will prepare the spaghetti for the dinner at 6 p.m. Holy Cross Hall. Admission is by donation.
The live auction begins at 7 p.m. and people are urged to drop by if they can’t make dinner.
Auction items include sports gear such as golf clubs, a treadmill, inversion table, vibration trainer, Bowflex gym, exercise ball, jungle gym and yoga gear.
Personal care items such as Hempz body scrub, facial treatments and manicures will be auctioned, along with a library membership, air hockey table, quilt, oak serving table, hand-made chess board, tool cabinet with tools and a framed Edmonton Oilers poster.
Other items include a post pounder, kitchen faucet, camping barbecue, tire rotation and inspection, CVI inspection, necklace, hot stone grill, colour printer and rug.
The Boots are overwhelmed by the support from Fort Macleod and district.
“It’s just been awesome,” Jaime said. “The community has been amazing.”
Jaime and Bradyn leave Aug. 7 and hope to return home 10 days later.
“There’s a couple things they can do but unfortunately we don’t 100 per cent know until we’re down there,” Jaime said.
The doctors in the U.S. will run a number of tests to pinpoint the problem before deciding how to proceed.
“Bradyn is very excited about it — very excited,” Jaime said. “Every time we’ve gone to Calgary to see a new doctor we’ve got bad news. This is really uplifting for him.”

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