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Family pays it forward for childhood cancer

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DNA or deoxyribonucleic acid is the main component of the chromosomes in all our cell nuclei.  DNA carries a cell’s inherited operating instructions, and if that isn’t enough, DNA self-reproduces every time a cell reproduces.  Our white blood cells or lymphocytes– that fight infections like hungry tigers– possess DNA.  White blood cells prowl through our circulatory system and bone marrow looking for a meal.

When the so called “T-Cell” section or “gene” in an immature white blood cell’s DNA changes, and that changed cell multiplies out of control, the victim has a leukemia called Acute T-Cell Lymphoblastic Leukemia or ALL.  To date nobody knows for sure when or why this gene damage happens.

ALL most frequently strikes Caucasian females aged 2-4 years, and is the most common pediatric cancer.  There are 3-5 cases a year per every 100,000 children worldwide.  Until 40 years ago, ALL was 100 percent fatal, but research and treatment breakthroughs have happily reduced that percentage to 10 percent or less now.

Three years ago ALL struck 4-year-old Paige Boutilier of Flower Mound.  She successfully endured two years of intensive chemotherapy and radiation treatments to eradicate her damaged white blood cells, but the treatment left her family with over $10,000 in insurance co-pays.

Their Flower Mound friends and neighbors rallied and organized the Pennies for Paige fund under the Cloud 9 Charities umbrella, and raised money toward Paige’s outstanding medical expenses.

They held a community garage sale.  They enlisted the Marcus High School cheerleaders who raised money.  The Bella Lago neighborhood donated to the fund, as did Donald Elementary School which held a fundraiser.  There was a fashion show, and a wine tasting/dinner and silent auction.  A restaurant donated a percentage of its sales.  A web designer from Double Oak donated a website to the fund.  Donation piggy banks appeared near local business cash registers.

Then after a year’s respite, Paige lost control of the right side of her face. ALL had returned and settled in her brain and spinal cord.

When the Pennies for Paige steering committee learned the oncoming insurance co-pays were expected to rise to multiples of $100,000 they decided to act against the rising financial tide in the fight for this brave little’s girl’s life.

“Pennies for Paige’s initial success came from the loving and giving spirit of Flower Mound residents,” said Flower Mound Town Councilwoman Kendra Stephenson, who is involved with the organization.

The foundation recently became an independent non-profit with its own board that focuses on fundraising, daily operations, and marketing.  The board expanded the scope to include other Flower Mound families with children suffering from life limiting illnesses.

“Our goal,” said Stephenson, “is to provide emotional and financial support for sick children and their families.  We want to make the community aware of childhood cancers, and support research and other emotional health care initiatives in North Texas.”

Along with Stephenson, Pennies for Paige’s board members include Paige’s parents, Jodie and Mark Boutilier, Flower Mound Mayor Tom Hayden, Susan Huskinson, Jean Levenick, Michelle Rivera, Lauren Topelson, Sydney Townsend, Cindy Van Ness, and Angela Venuk.

Jodie Boutilier said it didn’t take long for her to learn about another local family in need of assistance.

“This little boy is a third grader at Donald Elementary that has been diagnosed with AML (Acute myeloid leukemia, a cancer that originates inside the bone marrow).  He is in his third round of chemotherapy,” she said.

“If everything goes as planned, his bone marrow transplant may happen around the end of July or the beginning of August.  His older brother is a match and is going to be the donor– that’s very rare. “

Boutilier explained that the boy is Korean and minorities are very under-represented in the Be The Match Registry database that hooks up those in need of bone marrow transplants with potential donors.

Right now, the chance of finding a match on the registry is close to 93 percent for Caucasians, but for minorities, it can be as low as 66 percent, according to the National Marrow Donor Program.

“Paige was fortunate, she has nine matches to choose from if we ever have to go that route,” said Boutilier.

The process to become registered in the Be The Match database is very easy, Boutilier said.

“You can visit the website at www.bethematch.com, they will either send you a kit or you can come and see them and they will swab the inside of your mouth.  It is not painful; you do not have to give blood.”

On average, one in every 540 members of the Be The Match Registry will go on to donate bone marrow or peripheral blood stem cells to a patient.

Fundraising efforts are underway for the boy’s family, and those yellow piggy banks are scattered across Flower Mound at Rita’s Italian Ice, Lone Star Popcorn, Schlotzsky’s Deli, Turner’s Martial Arts, Straw Hat Pizza, and Mooyah, along with Square One Sidewalk Cafe in Old Town Lewisville.  You can also contribute online at www.penniesforpaige.com.

As for Paige’s outlook, “We are not out of the woods yet; we still have 14 more months of treatment and then two and a half years before they’ll say whether or not they feel like its safe to stop,” Boutilier said.  “We are at high risk for secondary cancers and she’ll live with that forever– there’s nothing we can do about it.

“So many of our friends and people we didn’t even know supported our family and our little girl. We have received so much from this organization and now we want to give back.”

To read about Paige’s odyssey or to volunteer or make a donation, check out the foundation’s website at www.penniesforpaige.com.

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