A lasting legacy

Danette Dooley
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Andrea and Becky died too soon, but their memories live on

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.”

telegram@thetelegram.com

danette@nl.rogers.com

Organizations: Wish Foundation, Janeway, Disney World Whiteway areas.Wish foundation

Geographic location: Shearstown, Florida, Whiteway

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Recent comments

  • Liz LeDrew
    July 18, 2013 - 11:45

    Batten's is such a horrible disease. I had a brother and sister die from it and I am a carrier. I hope some day there will be a cure. Liz

  • Marilyn Snow
    July 17, 2013 - 12:42

    Candace will always have a place in her heart for those little girls as she will for all the family. She was very privileged to have had the chance to help out with both little girls. She adored them both and will always hole them in her heart. xx

  • Brown eyes
    July 17, 2013 - 11:56

    Annette , you are a beautiful person. I myself is a parent . I admire who you are. Thinking about you and your family. Hold tight to your memories of those two beautiful girls. God indeed has two beautiful little angles. As I read your story, it brought tears to my eyes. There will come a day that you will hold your two little angels in your arms again. Until than, love and cherish every moment you have with Leah. May God bless you and your family.

  • sharon finlay
    September 04, 2011 - 18:12

    May god bless you both, you are both amazing parents,your story is just so sad,you have 2 little angels looking down on you from above,may god give you both the strength to keep up the good work.

  • Flo Hargraves
    September 02, 2011 - 20:36

    My prayers are with you and your family. It is wonderful to hear you have given so much back to the Children's Wish Foundation in memory of your daughters. From their photos I can appreciate how much you must miss them.

  • mudderl
    September 02, 2011 - 11:32

    Heartbreaking. I hope and pray this family finds joy and comfort in every way possible. Can't imagine going through that. A much stronger mother than I could be, I'm not sure I could do what she's done. My prayers go out to you.

  • sporter
    September 02, 2011 - 10:32

    A very touching story....so nice to have such wonderful memories of them and now to be helping others make memories.

  • Sarah
    September 02, 2011 - 10:19

    God bless you for all that you are doing for children in your daughters' names. They were beautiful little girls who looked like they brought much joy during their time here on earth.

  • Violet Holmes
    September 02, 2011 - 09:56

    Two beautiful girls gone too soon! Rest eternal grant them O Lord, and let light perpetual shine upon them. Congratulations to the families and supporters who so generously donated their time and talent in raising money for the Wish Foundation, making it possible to grant other sick children their wish!

  • Charlene Dawe-Roach
    September 02, 2011 - 09:45

    As a nurse.... I know the 'logistics' of everything you went through..... as a Mother, I have no idea how you did it! My heart aches for you and your Family but you are all to be commended for everything you did for the Girls and are still doing for the Wish Foundation! God Bless!!!!

  • Tocchet
    September 02, 2011 - 09:27

    Very sad story to read...my condolences to the Sparkes family. Applaud their perseverance! For those of you that don't know, Battens disease is rare but NL experiences an unusually high concentration resulting from our smaller gene pool. Both parents have to be carriers in order to pass along to children. Should you have a family history of this, as I do, a simple blood test will determine if you are a carrier.

  • BI
    September 02, 2011 - 07:58

    You can rest assured you were fantastic parents to the end, and still are for Leah. What beautiful daughters you had. My thoughts and prayers go out to you today.

  • BI
    September 02, 2011 - 07:41

    You can rest assured you were fantastic parents to the end, and still are for Leah. What beautiful daughters you had. My thoughts and prayers go out to you today.