Four-year-old Isla Ransom just might have more to celebrate than any other four-year-old in the Okanagan this year, and her parents want the entire community to mark the occasion.
This 20-pound wonder kid has a genetic condition called Edward’s Syndrome, or Trisomy 18, meaning she has a third copy of the genetic material on her 18th chromosome.
Like kids with Down’s Syndrome, where there’s extra genetic material on the 21st chromosome, Isla’s life has been very different from other children her age.
Every birthday is a true landmark, particularly after the rough bouts of illness she suffered this past fall.
“It was a really rough year for her,” said her mother Karrie Faucher. “For a while, I just thought I wasn’t going to be able to do her birthday…But I didn’t want to give it up.”
Since Isla’s first birthday, Faucher has thrown a huge public celebration at Summerhill Pyramid Winery, in part to mark another year of her incredible life, and in part to raise funds to help children and families like her own.
Hand-crafting auction paddles—this year, they are fairy wands to match the fairy theme of the birthday party—the family holds live and silent auctions, offers a raffle, entertainment and prizes at her ticketed party.
It all raises money for Canuck Place Children’s Hospice, the Vancouver-based respite haven and children’s hospice that has become an integral part of the family’s life.
This year, they were even at Canuck Place for scheduled downtime when Isla got one of the three bouts of pneumonia she suffered between September and January.
The staff’s early intervention helped her stay strong enough to win the battle and, knowing there were doctors and nurses on site looking after all of her needs, gave her parents the rest they required to help her cope.
Pneumonia is a serious, often fatal threat to children with Edward’s Syndrome and there are other challenges for this youngster as well. She is not very mobile or verbal, suffers constant seizures and is susceptible to infections.
When doctors first explained her condition to her parents shortly after her birth, there didn’t appear to be much hope she would live long.
“So when her first birthday was coming up, and so many people had helped us along the way, I just thought, we have to do something to really celebrate,” Faucher told the Capital News last year.
Faucher has since had another child, their third, and this fourth birthday party is no less a miracle or a celebration, in no small part because baby number three has added a new level of challenge to the family home.
Little Emie was an instant hit with Isla and their older brother, Oden. She was intended to provide a sibling who could grow up to play in the backyard with Oden, but she’s been an equally big treat for Isla.
“She adores Emie. She loves any loud, screamy thing,” said Faucher. “…And they’re actually now just learning to walk together.”
The couple are renovating to accommodate Isla’s wheelchair and trying to juggle the demands of a new baby, a boisterous boy in elementary school and a child with a rare medical condition.
And yet, uphill battle or not, Faucher has her fingers crossed their annual tradition can still raise the whopping contribution she turns over to Canuck Place each year.
Isla’s first birthday bash raised $5,000 and her second $8,000. Her third drew $12,000 and 200 guests and this year Faucher would love to reach $15,000, though time for planning has been sparse.
She has nonetheless secured a trip to Vancouver, complete with airline tickets, hotel stay and aquarium passes for a family; and the traditional $5 giant wine basket draw will be back.
And just like a fairy, sprinkling a little magic wherever she goes, Isla’s indomitable spirit will touch those who come out to honour her cause.
The event runs Saturday, April 27 from 2 to 5 p.m. at Summerhill Pyramid Winery on the lower veranda. Tickets are $20 for adults and $10 for kids five years old and over. The ticket includes entertainment, gourmet appetizers, sweet treats, kids activities and a champagne toast.
To purchase in advance one can go to Funktional, 447 Bernard Avenue, or Summerhill, 4870 Chute Lake Road, or simply purchase at the door. One can also donate online.