Though this Saturday's seventh annual Rally For Ally in Nottoway Park in Vienna has a namesake — Allyson Kelso, 6, of Burke — it is not for her. Instead, it's for the organization that gave them not just information, but hope when Ally was diagnosed with a rare condition.
Ally was born in December 2004, with multiple physical anomalies: a bilateral cleft lip, two fingers on each hand and two toes on each foot. It shocked parents Kristin and Mark — to say the least. Mark passed out in the delivery room and spent three days in the ICU with traumatic brain injury.
As Kristin once wrote, "The dream of having a 'perfect' baby with a button nose, rosebud mouth, and the proverbial 'ten fingers/ten toes' vanished in an instant."
After some research, a neonatologist diagnosed Ally with Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC). They knew nothing about why their daughter had been born with the syndrome. After all, their older daughter Morgan had no signs of the condition. They didn't know what was next. Nor did the doctors.
The family found National Foundation for Ectodermal Dysplasias online, and Kristin's sister, Ashli Matus George, gave them a call. NFED, a nonprofit, quickly sent packets of information not just to Kristin and Mark, but to the whole extended family. NFED, based in Mascoutah, Ill., became a go-to resource for the family, and the support they've received ever since has comforted them.
"They were instant family," said Ashli, of Oakton. "They couldn't have been more helpful."
The family learned the condition is genetic, but it can begin in a person who has no family history of it. Though no cure exists, one can live a long and healthy life with most forms of EEC.
But perhaps most importantly, the Kelsos learned Ally was not alone.
In 2006, the Kelsos attended the National Family Conference, hosted by NFED.
"To see another child that looks like your child for the first time and know that you're not alone in this journey, it's really hard to put it to words," Kristin said. "It is very emotional when I think back to those days five years ago when I met another family who was dealing with the same things we were. And it was important for my older daughter to see other people like her sister."
And so the Rally For Ally began in appreciation of NFED's kindness and good work. Ashli organized the first one before Ally was even a year old. The summer of 2005 featured a barbecue in an alley next to Ashli's Georgetown rowhouse to raise money for NFED with just a few invited guests. Ashli shattered her goal of "maybe $500" by raising instead $6,500 through in-person donations, online donations, raffle sales and a silent auction.
"I honestly thought I could get 25 people to bring $5 and that would be fantastic," Ashli said. "I was blown away."
The rally has since moved to the suburbs in Nottoway Park to fit the nearly 200 expected guests.
She gets friends and businesses to donate items and gift cards for the raffle. Vienna Inn donates hot dogs, which her father grills. Willard's Barbecue in Chantilly donates barbecue at cost and her friends sign up to bring snacks.
This year's goal is to raise $20,000. Last year, they raised more than $18,000. In total, Rally For Ally has raised $70,000 for NFED.
"Ally was fortunate to have most of her medical care costs covered by insurance. NFED helps other families who might not be as fortunate," Ashli said. "They also help fund research, provide educational tools for families and host a huge family conference each year. I wanted to help them achieve all those things."
Ashli said it's also important to her that others become aware of the syndrome and of people's differences and challenges. As Ally has gotten older, other different issues have arisen. Along with missing and toes, she has sparse hair, missing teeth and is mostly blind.
"Ally's great. She's fine," Ashli said. "She sings, she goes to a mainstream school, she's a great kid. I guess I just want to spread the message of, 'Don't judge a book by its cover.'"
NFED has been able to use Rally For Ally as a template to promote to other families interested in raising money for the foundation.
"We've encouraged family fundraisers from the beginning," said Carol Agne, director of development for NFED. "We're not federally funded. We are not a United Way organization. So, all of the funds we raise, we raise ourselves. So engaging our families in the fundraising area has been important to us. So I've asked Ashli to speak at our family conference to explain how she's been able to be so successful."
Ashli has been successful at explaining to other families that fundraisers should be an activity they like, Agne said. It doesn't have to be a barbecue. Golf tournaments or bake sales or runs work just as well.
"It humbles us that families want to repay us through fundraisers," Agne said.
Ally plans to speak to the crowd at Saturday's rally, which is scheduled for 11 a.m. to 3 p.m. at Nottoway Park, for the first time.
"I just want to say, 'Thank you for coming to the Rally for Ally,'" Ally said. "I think it's really good and nice of them to come."
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