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Family shocked
Pembroke Daily Observer - Ontario, Canada
By SEAN CHASE
Life shouldn't be complicated when you are three years old.
Two months ago, Brody Kilby-McGuire was like any other child. A bundle of energy, he played on the swing set with his brother and chased his pet German Shepherds across the yard with reckless abandon.
Then he started experiencing difficulty climbing the stairs, even entering and exiting the front door of their Airport Road home. His parents took him to the Children's Hospital of Eastern Ontario where he was diagnosed with Duchenne Muscular Dystrophy.
Duchenne MD is a severe recessive form of muscular dystrophy, which sees rapid progression of muscle degeneration. It affects one in 3,500 males.
The disorder is caused by a mutation in the genes. Doctors found that Brody's CK, or Creatine kinase, level, an enzyme which is the byproduct of wasting muscles, had skyrocketed above the average level of 350 to 12,000.
"It was devastating," says Brody's mother, Erin Kilby, adding there was no hereditary history of the disease in the family. "But we decided we're not going to sit back and watch him deteriorate."
Due to the progressive nature of Duchenne's, Brody's parents are readying their son for the fight of his young life, a battle they are not willing to concede.
"It's not the kind of disease that gets better as they get older," his father, Dan McGuire says with a grave look of concern on his face. "They are lucky if they make it to 20."
Right now, the fair-haired boy is active and looking forward to his celebrating fourth birthday on May 23. However, the prognosis is not good. Brody could be confined to a wheelchair by age eight or using braces by age 10. By age 12, he could be a quadriplegic.
They have yet to receive DNA test results from CHEO that will determine the specific genetic mutation of the disease, however, the family is exploring several treatment options, including umbilical cord blood stem cell transplants. So far they've consulted with experts and some pharmaceutical companies.
His parents feel Brody's best chance at treatment remains overseas. They've been in touch with a clinic in the Dominican Republic which is staffed by American doctors who moved their practice there when former U. S. president George W. Bush banned federal funding of stem cell research in 2001.
A potential treatment there will cost $36,000. Another option is a clinic in China.
"They've had good results with cord blood especially with Muscular Dystrophy," saysMs. Kilbywhois dismayed that no such treatments are offered in Canada she believes because pharmaceutical companies seenoprofit instemcell science.
"(President Barack) Obama lifted (the ban) but they say they are 10 yearsbehind."
Reviewing test cases, Mr. McGuire has discovered instances where stem cells have "slightly cured"some MuscularDystrophypatients.
One story he seized on was that of a 12-year-old boy who hadn't walked in three years saw tissue start to grow after an umbilical cord stem cell transplant.
"Cure is a strong word," concedes Mr. McGuire.
"It's been a miracle in many people's lives."
Brody's parents' hope is to find some form of cure that will, at the very least, keep their son out of a wheelchair, however, they feel they have time on their side to deal with theaffliction.
"We were lucky to have him diagnosed this early," remarks Mr. McGuire.
"A lot don't find out until they are older."
A fundraising concert for Brody Kilby-McGuire will be held on Saturday, May 30 at the Pembroke Legion Branch72beginningat9p.m.
ThefeaturedbandswillbeDrifters HighwayandFootSoldiers.
Admissionis$10.
SeanChase isaDailyObserver reporter
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