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DEL.ICIO.USA Legacy for Twin Angels
The Atlanta Journal-Constitution
Corynne, one of the twin girls, has already gone home.
She and her sister, Cathyrn Bouchard, were born on Sept. 7, 2006, with Niemann-Pick Type C Disease (NPC), a genetic neurodegenerative disease that’s ultimately fatal. Life expectancy is hard to predict.
Corynne died on May 4, 2008. She was 19 months old.
The girls are the daughters of Justin and Kristen (Kumin) Bouchard. They live in Frisco, Texas, now, but they are one of us. Lilburn residents. Brookwood High grads. Justin, 32, earned a bachelor’s degree in music from Georgia State University; Kristen, 29, holds an engineering degree from Georgia Tech.
“Georgia is still ‘home,’ and our lives there shaped us into the people we are today,” wrote Kristen in an e-mail.
About five years ago, Atlantic Southeast Airlines transferred Justin, a captain, to the Dallas-Fort Worth area. He now works for the Federal Aviation Administration. Besides Cathryn, they have two sons, Caleb, 8 and Colin, 3.
The twin girls were diagnosed with NPC shortly after their first birthday. They had enlarged livers and spleens due to a build-up of harmful fatty substances. Kristen tried to learn as much as she could about the disorder. Though advancements have been made in the past 15 years or so, effective treatments and a cure don’t exist.
“This is an incredibly complex disease,” she wrote, “and it will require a lot of research to find a cure. Research takes money - a lot of money.”
Ara Parseghian, legendary football coach of Notre Dame, is perhaps the most famous person associated with NPC. Three of his grand kids were diagnosed with it. That led him to found, in 1994, the Ara Parseghian Medical Research Foundation, a Tucson-based nonprofit which to date has raised $32 million to aid research. Progress has been made.
“We have one drug in trial, and we have five or six candidates that are in the pipeline and we hope to get those to clinical trial as well,” said Glen Shepherd, the foundation’s executive director. “NPC is a very variable disease. Quite a force. We are moving along.”
But like Kristen said, research takes money. A million sounds like a lot of money, but it’s not that much cheese. Consider this. If 100,000 Gwinnettians each ponied up $10, you’d have $1 million. Kristen made a similar point in a June 12 article that appeared in the Dallas Morning News. The story was about the twins, their disease, the loss of Corynne and, ultimately, the Bouchard’s legacy mission.
They’ve started a campaign to raise $1 million for NPC research, teaming up with the Parseghian foundation. Fund-raisers are being held in their hometown; plans are being made for a 5K run. They’d like to hit the magic number by the end of the year, but if not, they plan to persevere.
“This is a battle we will be fighting our entire lives,” Kristen said. “It is definitely not the only million we intend to raise, just the first.”
Online: www.angeltwins.org, the story of Cathryn and Corynne Bouchard; www.parseghian.org., website for the Ara Parseghian Medical Foundation. Donations may be made at both sites. Rick Badie’s column appears on Sundays, Tuesdays and Thursdays. Contact him at 770-263-3875 or e-mail: rbadie@ajc.com.
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By Danielle
July 14, 2008 9:13 PM | Link to this
I can relate to the Bouchard family 100%. My sweet 6-year old daughter was diagnosed with NPC in October, 2007. We, too, are doing what we can to raise awareness and funds in our area. Keep up the fight. You are not alone. If you ever want someone to talk with, please do not hesitate to contact me. Your family is in our prayers.