Charity Run Raises More Than $200K for Awareness and Research
By Jennifer Reese (ECNV Medicaid Programs Coordinator)
In May, the fifth and final Carter’s Run was held in Ashburn.
What is Carter’s Run? It’s a charity run and family festival dreamed up by Carter’s Mom Lisa Zimmerman.
Jessica Funk Photography
I’ve been friends with Lisa for 8 years now, since our kids were babies. We’ve been through a lot together, but have always been there for each other through the journey of being a parent of a child with a disability.
Lisa and I have both chosen to be advocates for our kids and families like ours.
My professional career led me to ECNV, but Lisa took a different path.
Five years ago with the support of her husband Doug and a dedicated group of volunteers, Carter’s Run was born.
Proceeds from Carter’s Run which totaled $26,000 in 2016 and more than $210,000 since they began in 2012 are donated to the Dandy-Walker Alliance and:
- Created a worldwide Dandy-Walker Patient Registry that is helping researchers better understand the major health issues experienced by individuals with Dandy-Walker
- Funded the largest whole exome sequencing research project of Dandy-Walker samples ever conducted. This project is advancing knowledge into the biology and genetic basis of the birth defect
- Produced and disseminated educational publications worldwide, providing outreach and support to families, and hosting awareness events and programs for Dandy-Walker
"Thanks to Lisa and her fundraising we are learning more about the genetic causes of Dandy-Walker Syndrome through next generation sequencing,” Said Eric Cole, executive director of the Dandy-Walker Alliance. “This holds great promise that in our lifetime we will see therapeutic interventions and quite possibly a cure that will help children all over the world."
Not many people have heard of Dandy Walker (DW) and yet 1 in 2,500 babies are born with this syndrome. DW is a congenital malformation which affects the brain, specifically the cerebellum, which controls movement, and the fluid-filled spaces around it. There are many variations to the degrees of DW, it can appear dramatically or develop unnoticed. In most cases, symptoms develop early on with slow motor development.
This is what happened with Carter, who is now 8-years-old. He started to miss milestones around 6 months old and his parents noticed that he wouldn’t bear weight on his legs when they would stand him up. He also didn’t grasp a toy in his hand.
Testing later showed abnormalities in his cerebellum. Carter has fluid where 10-20% of brain mass should exist. Many DW patients will have a shunt placed to drain the excess fluid from the brain but luckily, Carter hasn’t had any pressure build up in his brain to warrant this.
Carter got an official diagnosis of DW Variant in October of 2008, when he was 7 ½ months old. At 14 months Carter was diagnosed failure to thrive and he had surgery to have a feeding tube placed.
Now Carter is fed a “blenderized” diet which means he gets real food in his feeding tube, not formula which is the normal diet with a feeding tube.
Lisa, who I’ve deemed the “blended diet guru”, prepares all of his meals with a super-powered blender. She goes for maximum calories and nutrition. The latest she’s trying is camel milk which some say helps with better sleep; increased motor planning and spatial awareness; increased eye contact; better language and improved gastrointestinal function. He still isn’t taking much of anything orally, but, the hope is that eventually, he will take 100% of his nutrition orally and have the tube removed.
No one knows what the future holds for Carter.
“At this point, we try to afford him every opportunity that we can and we are hopeful that he will be able to live independently as an adult,” Lisa said. “For now, we are thrilled he’s happy and thriving. He brings us joy every day and has taught our family so much along our journey.”
Carter loves playing outside and especially with his two younger brothers Oliver and Crosby.
“Our 3 boys will learn many wonderful things from each other along the way, two of which will hopefully be patience and compassion,” Lisa said. “These are two things that my husband, Doug, and I have surely learned so far.”
Carter is one of our consumers at the ECNV satellite office in Loudoun County, Loudoun ENDependence.
Find more information about the Dandy-Walker Alliance