Rare Diseases

Ontario parents living in N.B. seek out-of-country treatment for child with rare disease

The Ontario parents of a baby boy born with a rare disease say they may have to look outside the country to save their child’s life. Global’s Adrienne South has their story.

The parents of an 11-month-old baby boy in Oromocto, NB say they’re doing whatever they can to get their son in for surgery to treat his rare disease that’s left him unable to make a bowel movement on his own.

Monica Lacrocque said her son Mateo was diagnosed with Hirschsprung’s Disease three days after he was born. She said he’s unable to pass stool because of a problem with his bowels.

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“We waited until he was three months old and had a surgery done to try and correct that and unfortunately the surgery was not successful and we still have a baby that is having trouble passing stool,” Larocque said.

She and her husband Master Cpl. Sam Orprecio moved to New Brunswick in June from Ontario after he was posted to CFB Gagetown.

“Two to three times per day we have to insert a catheter into his bottom and manually help him evacuate his bowels. He can’t pass any stool on his own,” Larocque said.

Family grateful for community support while trying to find surgeon to help son with Hirschsprung’s Disease @Global_NB pic.twitter.com/bi3qygXQbf

— Adrienne South (@AdrienneKS) August 8, 2017

She said the irrigations were working okay until the last couple months, but said because his diet is advancing it’s becoming more challenging to keep him healthy.

“If you’re not able to keep him cleaned out properly of stool he can develop an infection that can be life threatening in these babies [with the disease], and so it’s a big stresser for our family to make sure we’re doing an adequate job keeping him cleaned-out,” Laroque said.

“My plate’s pretty full at work because we just got posted here in June,” Orprecio said. “Monica has been through a whole lot getting him irrigated two to three times a day if need be, just to keep him healthy.”

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She said there are options in Canada for surgery but said a surgeon in Ohio sees a higher volume of children with the disease, and wants to take him to a specialist there who has performed more surgeries to fix this condition than other surgeons in Canada.

“There’s options in Canada, so lots of pediatric surgeons in Canada, the problem is that we just don’t have one specific centre that sees a high volume of these babies,” Larocque said.

Larocque said she’s heard good things about the…