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A mother's dream hangs on a contest vote

Erin Curtis has always loved her grandmother's stucco farmhouse, which sits on a bank of the Perkiomen Creek with a front-porch swing, sunflowers in summer, and remnants of a roadside stand where she used to sell her uncle's produce.

Calvin and his mother, Erin Curtis, share a swing on the porch of her grandmother’s house in Schwenksville, which Curtis hopes to convert to a haven for bereft families — like hers. (CHARLES FOX / Staff Photographer)
Calvin and his mother, Erin Curtis, share a swing on the porch of her grandmother’s house in Schwenksville, which Curtis hopes to convert to a haven for bereft families — like hers. (CHARLES FOX / Staff Photographer)Read more

Erin Curtis has always loved her grandmother's stucco farmhouse, which sits on a bank of the Perkiomen Creek with a front-porch swing, sunflowers in summer, and remnants of a roadside stand where she used to sell her uncle's produce.

The Schwenksville property has been in her family for five generations, but last spring, her 92-year-old grandmother fell and had to move to assisted living. The family considered selling the house to pay for her grandmother's care.

"To drive by and know it's not yours anymore after already losing what seems like almost everything . . . " Curtis, 29, said.

She was not exaggerating.

Curtis and her partner, Jeff Megonigal, watched two children die, one after the other, from infant acute lymphoblastic leukemia.

That one of their children would get the disease was horrendously bad luck, since only about 300 cases are diagnosed each year. For it to strike siblings "is almost unheard of," said Children's Hospital of Philadelphia oncologist Julie Stern, who treated both Avery and Nolan.

Curtis said doctors had told her that they were the first non-twin siblings with the illness. Unlike some other cancers, the disease is not known to run in families and is much more difficult to treat than childhood leukemia.

Afterward, Curtis found strength in the idea of living in her grandmother's house and helping other grieving parents. She wants to turn the five-acre property into a soul-soothing retreat with a memorial garden, room for fund-raisers, or a place for a peaceful walk along the creek.

Carrying a price tag of $220,000 and needing extensive renovations, the house was beyond the couple's financial reach.

Then in January, a friend told them about the Pepsi Refresh Everything Project, a contest that will award $1.3 million for community-improvement projects, with the top two receiving $250,000 each. The winners are determined by online voting that will end Wednesday.

Erin's Dream, as it's called, is in third place among the more than 1,000 entries, behind proposals to fund research of spinal muscular atrophy and to build a children's home in Mississippi. Other projects include building a skate plaza, stocking school libraries, and helping North Korean refugees.

Friends and family are working hard to get out the vote. Tonight at the Trappe Tavern, friends will bring laptops so customers can vote on the spot. And from noon to 3 p.m. Sunday, Speck's Drive-In in Collegeville will give free drinks to anyone who votes. More than 100 signs are scattered on lawns throughout Montgomery County.

"It's really very uplifting and supportive," said Curtis, a former high school Spanish teacher, who lives with Megonigal, a lumber salesman, in Boyertown, Pa.

That is what she hopes for others:

"It's very isolating losing a child. We struggled after we lost Avery with putting the pieces back together," she said. "People can gain from that experience."

Her ordeal started in October 2006 when her 5-month-old daughter's disease was diagnosed. Avery was at Children's Hospital from October to December, but relapsed the next June.

By September, there was nothing more that could be done, so the family took her home and tried to cram a childhood of fun into her remaining time. They went to the zoo, the aquarium, museums, and a Phillies game.

Dozens of people stopped by to say goodbye.

"It was actually unbelievable how many people spontaneously showed up," said Curtis' father, Andrew Curtis III, a retired police officer.

Ten days after coming home, on Oct. 1, 2007, 16-month old Avery died.

"It was a really empty feeling," her mother said.

The couple were eager to have more children, and doctors assured them that the disease would not strike twice. Ten months after Avery died, Curtis had identical twin boys.

But when they were 4 months old, she got a sickening shock: Nolan had the same illness.

Andrew Curtis recalled going to the hospital and hearing the staff say, " 'This can't be Avery's brother. This can't be happening.'

"But it was. It seemed like a bad dream, and it still does."

Erin Curtis had to quell her own disbelief to focus on her son.

"I'd been there before, and I saw with Avery how a mom's attitude makes a difference," she said. "This was his life, his fight. So we started back at square one."

Unlike his sister, Nolan was much sicker with infections and cardiopulmonary failure. The whole family stayed in the hospital from December to March. On March 18, 2009, the family decided to withdraw care, and Nolan died minutes later in his mother's arms.

As awful as that was, Curtis' nightmare is not completely over. She lives in fear that leukemia could strike again, as twins have a higher risk of getting the same illness.

Though he made it past the one-year mark for infant leukemia, 19-month-old Calvin gets tested for cancer every eight weeks. And every bruise or bloody nose rattles his mother.

"Some days are worse than others," she said of the worry that her toddler also will die, as they rocked on the wooden swing and watched cars whiz by on Route 29.

Friends admire her fortitude.

"The thing that's been remarkable is Erin's strength and courage through this whole thing," said a good friend, Randy Doaty, her father's former police partner, who is drumming up support for the contest.

That's evident when she says the end of Avery's and Nolan's lives was not the end of their parents'. She already has helped find a home for a family with a terminally ill child in a motorized wheelchair who was living in a second-floor apartment. Friends sold the family the house at a discount and donated extensive repairs.

Her grandmother's house also needs a complete overhaul, including a new roof, windows, electrical, and plumbing, most of which is being donated as well.

But if she doesn't come up with $170,000 by November, the house will be sold. If that happens, Curtis said, she will find another way to reach out to people whose sorrow she understands better than most.

"It's not a club you want to be a part of," she said, "but it's a club that exists."