Annette Sparkes remembers the Christmas her twin girls were two years old, and their sister just a year older. Santa filled the living room with shopping carts, bikes, dolls and baby strollers.
She and her husband, Gary Sparkes, had no idea that in just a few years the living room would be turned into a palliative care unit.
Andrea Sparkes died of Batten disease on Jan. 18, 2008. Her twin, Becky, lost a similar battle on Dec. 3, 2008.
Had they lived, they would have celebrated their 10th birthday on Aug. 24.
“Becky was like a little firecracker. She was all for her dad. She had a lot of energy and everything was a bit of fun for her,” Annette Sparkes said during a recent telephone interview from her home in Shearstown, Conception Bay North.
“But Andrea was always wanting to be up in your arms, reading a book.”
She said the girls were “perfectly normal” at birth but began having seizures at age three.
At four, they were diagnosed with Batten disease — an inherited disorder of the nervous system.
Annette and Gary were told the disease was fatal and they vowed to make the girls as comfortable as they could for as long as they lived.
“In the span of one year they lost all their abilities to walk, talk, eat, and their vision,” Annette said.
The twins needed around-the-clock care for the last two years of their lives.
Annette’s mother, Frances Drover, and Gary’s mother, Helen Sparkes, helped out a great deal.
“The doctors and staff at the Janeway were exceptional from the time they were diagnosed, through their sickness and passing and even today,” Annette said.
Both girls died at home.
“I prearranged their funeral; I did their hair. I did everything,” Annette said. “And everything went how I envisioned it would be. It’s something I had to do because if I didn’t do it, that’s where I’d find regret.”
A family friend sang “Hallelujah” by Leonard Cohen at both funerals.
Annette said the family has many fond memories of the twins, as does their sister, Leah, who is now 11.
Among those memories is the trip to Disney World in Florida that the family took in 2005 — four months after the girls were diagnosed — thanks to the Children’s Wish Foundation.
“The big highlight of the trip for Becky and Andrea was to see Shrek and the Cat in the Hat. It created a lot of memories for all of us as a family, ones that we will never forget, especially the smiles on their faces.”
Because both children qualified for a wish, the twins also received an electronics package that included a big-screen television.
“Even when they lost their vision they still sat in front of the TV in their recliners and listened and laughed.”
The family celebrates the twins’ birthday each year by hosting a golf tournament at Pitcher’s Pond Golf Course in Whiteway. Proceeds of the day are are donated to the Children’s Wish Foundation.
Gary’s father (also named Gary) said the family began donating money to the foundation in 2008 after hosting a family get-together at the golf course to celebrate the twins’ great-grandfather’s 90th birthday. (Robert George has since died).
“We took a bag of old golf balls and we decided to see who could drive them out the farthest in the pond. We charged $5 for three balls,” he said.
The drive raised about $700.
In 2009, the family hosted its first golf tournament.
They presented the Children’s Wish Foundation with a cheque for over $37,000 on the twins’ birthday this year — money raised through this year’s tournament.
In total, they’ve donated almost $57,000 to the cause.
Annette said credit for the success of the tournament goes to the George and Sparkes families as well as friends and supporters in the Shearstown and Whiteway areas.
Wish foundation co-ordinator Valerie Geary said they’ve granted 28 wishes this year, another 49 have been approved and 11 others are in the consultation phase.
The average cost of fulfilling a wish is $10,000.
Annette said planning the tournament takes time, but it’s the family’s way of remembering Becky and Andrea.
“It’s like planning a big birthday party,” she said.
“It’s a fun day but it’s an emotional day, too.”