The community's response so far to a fundraiser to benefit the family of an Ontario infant suffering from a life-threatening disorder "really makes me proud to live in Squamish," the youngster's aunt said last week.
Nathaniel Lupton, who turns one just two days before the fundraiser on Saturday, April 9, has already undergone a bone-marrow transplant and has to be given regular blood transfusions as part of the treatment for Wiscott-Aldrich syndrome (WAS), a disease that affects only one in 3 million live male births.
"Nate" was diagnosed at just two months old when his mother took him to the doctor for what she thought was a heat rash. The young resident of Grimsby, Ont., near Hamilton, has spent the past 10 months in hospital undergoing chemotherapy, receiving blood transfusions and, on Dec. 2, undergoing a bone marrow transplant.
Without the transplant, most children do not survive past the age of 13, said his aunt, Squamish resident Kerri Gray. With it, he stands a fighting chance of living a full life - but he's a long way from being home free, Gray said.
He remains in hospital, undergoing blood transfusions three to five times per week, while doctors and his family wait to see whether the marrow transplant and other treatments have sent the disease into remission. If not, he may have to undergo a second bone marrow transplant.
He has spent much of his first year of life in isolation because his compromised immune system means he's extremely susceptible to illness from airborne pathogens, Gray said.
"There's no point in us going to see him if we were to go there," she said.
Nathaniel's father Michael, Gray's brother, mother Amy and brothers Spencer, 11, and Chase, 10, have had to turn their lives and home upside down because of the youngest Lupton's illness. Neither parent can work and they've had to make renovations to their home -including replacing all carpets with hardwood and adding a special filter to their furnace that purifies the air, Gray said.
"They had to rip out the walls and floors to make sure there was no mould growing there," she said. "They've had to get rid of their cat and dog. He was home for a day visit and we're hoping maybe in the next week or two he might be able to return home, but still visit the hospital every day."
Many of Nathaniel's relatives live in Squamish, and dual fundraisers are planned in Grimsby and Squamish on April 9. The Squamish event, which takes place from 9 a.m. to 4 p.m. at the Squamish Baptist Church, is to include a garage sale, a craft sale, a bake sale, a silent auction and hot dog sale.
"We're trying to cram as much as we can into one day to raise as much money as we can," Gray said.
Organizers are seeking items for the garage sale, bake sale and silent auction. Already the silent auction is to include more than 30 items including a night out with cash at the Pan Pacific Hotel in Whistler, a pool party at the Best Western Mountain Retreat in Squamish and a Whistler Blackcomb Edge Card valued at $320.
"Tim Hortons is supplying coffee and McDonald's is supplying juice," Gray said. "It's been just amazing to see the response. It really makes me proud to live in Squamish to see people coming together like this, just the love that you get. It's been very heartwarming."
For information, visit the Facebook page Birthday Fundraiser for Nate the Great. To contribute items for the garage sale, bake sale or silent auction, contact Gray at [email protected] or phone (604) 567-8770.
