Fundraiser launched to support family of Merritt boy who needs lifesaving surgery for rare liver condition

While most young kids and families would be preparing for the return to school in a few weeks, Kolby Ursulak, his mom and godmother are planning a cross country journey for a lifesaving surgery.

“Inside my liver, how it’s not getting clean, it could cause damage or it could cause cancer,” seven-year-old Kolby told CFJC Today Thursday (Aug. 21).

Abernethy malformation is a rare liver condition where, in layperson’s terms, blood bypasses the liver through a shunt, resulting in the blood not being filtered. The procedure set for September is done in three stages, beginning microscopically before Kolby goes under the knife.

“They will cut him open and go in behind the liver and tie of part of the shunt, and it is a very high risk for blood clots, so he will be sedated and in ICU for five-to-seven days,” explained Kolby’s mom Nyomi. “Then, once that is healed up a little bit, they will go back in and completely close it off.”

Kolby was born with the condition but it went undiagnosed for the first seven years of his life, with an emergency room doctor in Merritt making the catch in February. The recent revelation connected several dots from his childhood for mom.

“Normally kids with this, or anybody with this, especially if they don’t know they have it, their body just naturally doesn’t want protein,” said Nyomi. “We couldn’t figure out why he wouldn’t eat meat of any kind. It was struggle to make him start eating meat.”

The family launched a GoFundMe to help fund their journey to Montreal, which they will have to make three separate times for post-op check ups, as it’s one of only two places in Canada capable of the operation.

“The community support has been amazing, overwhelmingly amazing,” said Nyomi. “The day that we found out we went around to several different business, we weren’t told ‘no’ by anybody to put up a donation bin.”

Kolby’s surgery is currently scheduled for September 17 and, as of August 21, the family is still short of the $16,000 fundraising goal.

The GoFundMe campaign can be seen here.