Mak­ing wishes come true

Mem­o­ries of the late Becky and Andrea Sparkes help raise some $280,000

The Compass - - FRONT PAGE - BYMELISSA JENK­INS

A home­made wooden highchair built for two still sits in the cor­ner of the dining room in the Sparkes fam­ily home af­ter sev­eral years be­ing empty.

The names “Re­becca” and “Andrea” can still be read along the joint back­rest, although the “E” in Re­becca has be­gun to come off.

Becky and Andrea were the twin girls of An­nette and Gary Sparkes of Shearstown, Con­cep­tion Bay North (CBN), who lost their bat­tle with Bat­ten’s Dis­ease in 2008, 11 months apart.

The twins, who were born in 2000, were in­sep­a­ra­ble, An­nette told The Com­pass dur­ing a re­cent in­ter­view at her home.

Their deaths sparked an over­whelm­ing amount of sup­port from com­mu­ni­ties in CBN and the Trin­ity Bay town of Whiteway, when the Sparkes and Ge­orge fam­i­lies be­gan host­ing a golf tour­na­ment for the Chil­dren’s Wish Foun­da­tion.

They were seen as a small fam­ily who gives from the heart.

Learn­ing of ill­ness

When the girls were three, they be­gan hav­ing seizures that were al­most rhyth­mic.

“Becky would have one, Andrea would have one,” An­nette ex­plained. “Becky would have two, Andrea would have two. Then Becky would have one and Andrea would have one.”

At first, the di­ag­no­sis was epilepsy. But af­ter a year, it was de­ter­mined that di­ag­no­sis was in­cor­rect.

On July 6, 2005, the girls were di­ag­nosed with Bat­ten’s dis­ease, a ge­netic dis­or­der.

“The doc­tor didn’t re­ally ex­plain what Bat­ten’s was,” An­nette said. “So I came home and Googled it.”

She read through a web­site and seen the term fa­tal. That caused her to close the page.

An­nette couldn’t con­tinue read­ing. How could her four-year-old daugh­ters be dy­ing?

The form of Bat­ten’s the girls had, late in­fan­tile neu­ronal ceroid lipo­fus-cinoses (NCLs), af­fects phys­i­cal and men­tal state. Pro­teins and fats build up along the body’s tis­sues, in­clud­ing the brain, pre­vent­ing dam­aged cells from be­ing ex­pelled. Signs that be­gin to show in the early stages are seizures, like the girls ex­pe­ri­enced, vi­sion is­sues and a loss of mus­cle co­or­di­na­tion. It rapidly pro­gresses, lead­ing to death, nor­mally be­tween the ages of eight and 12.

A doc­tor sug­gested the girls, who were sti l l ac­tive and ap­peared healthy, would need feed­ing tubes within six months. In De­cem­ber 2005, both girls had feed­ing tubes in­serted on the same day. A mag­i­cal wish The Chil­dren’s Wish Foun­da­tion was in close con­nec­tion with the fam­ily from the begin­ning of the di­ag­no­sis.

It was four months later, and the first wish was granted, al­low­ing the fam­ily to take a trip to Dis­ney World in Florida. The girls got to ex­pe­ri­ence meet­ing their favourite char­ac­ters, in­clud­ing Shrek.

Af­ter a won­der­ful trip, and many last­ing mem­o­ries, the fam­ily re­turned home.

It wasn’t long be­fore the phone rang again, this time the foun­da­tion asked for their sec­ond wish.

Around this time, Becky and Andrea be­gan to have is­sues with their vi­sion. The fam­ily asked for a big screen tele­vi­sion so the girls could con­tinue to watch their favourite shows and movies.

When the day came for the wish to be granted, a com­plete entertainment sys­tem was brought to their home. The foun­da­tion even let sis­ter Leah choose some of the movies that were also given to the fam­ily and let her plan the foun­da­tion’s part at the fam­ily’s home. “That was re­ally im­por­tant,” An­nette said. The girls con­tin­ued to en­joy the tele­vi­sion and entertainment sys­tem, even af­ter their vi­sion was mostly gone.

Wishes have been said to give fam­i­lies mem­o­ries they may not have had with their chil­dren oth­er­wise, and the Sparkes fam­ily were grate­ful for theirs.

They joined forces with more fam­ily and friends, and be­gan to raise money for the foun­da­tion.

The first fundraiser was a golf tour­na­ment in 2007 for Andrea and Becky’s great-grand­fa­ther, the late Robert Ge­orge’s 90th birth­day. It was called Ge­orge Fest, and they raised some $800.

Andrea passed away in Jan­uary 2008, be­fore the sec­ond golf tour­na­ment. But the fundraiser hap­pened again, rais­ing a bit more than the pre­vi­ous year.

Af­ter Becky passed in De­cem­ber 2008, the tour­na­ment was re­named the Becky and Andrea Fun Fest.

To date, do­na­tions and pledges have to­taled $280,000.

An­nette ac­cepted the out­stand­ing phi­lan­thropist award for 2013 from the As­so­ci­a­tion of Fundrais­ing Pro­fes­sion­als on be­half of the event.

She said the award was all about a group ef­fort, and the suc­cesses and strives they’ve made to­gether.

“This re­ally shows what fam­ily, friends and busi­nesses are do­ing to help,” An­nette ex­plained. “But we’re just be­yond proud of what we, as a group, have ac­com­plished.

“Any­one who has helped in any way, they have helped make this as big a suc­cess as it has been.”

Photo by Melissa Jenk­ins/The Com­pass

In mem­ory of twins Andrea and Becky Sparkes, Dad Gary (left), mom An­nette (cen­tre) and sis­ter Leah have been a big part in fundrais­ing hun­dreds of thou­sands of dol­lars for the Chil­dren’s Wish Foun­da­tion through an an­nual golf tour­na­ment.

Sub­mit­ted photo

The com­mit­tee has been work­ing hard to put off the golf tour­na­ment all year. Rep­re­sen­ta­tives from the Chil­dren’s Wish Foun­da­tion joined the group dur­ing the fes­tiv­i­ties to an­nounce the to­tal do­na­tions and pledges. Those on hand for the an­nounce­ment were, from left, An­nette Sparkes, Gary Sparkes, Leah Sparkes, He­len Sparkes, Gary Sparkes Sr.,Terry Sparkes, Jennifer Sparkes, Joy Par­sons, Robert Ge­orge, Jo-Anne Ge­orge, Jes­sica Ge­orge, Tyler Ge­orge, Shel­ley Drover, Frances Drover, Rachel Drover and Edie New­ton (Direc­tor Chil­dren’s Wish Foun­da­tion). Miss­ing from photo, Christo­pher and Jennifer Ge­orge.

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