Holley woman, 20, embraced an active life, while living with vascular Ehlers-Danlos syndrome
Family and friends establishing memorial scholarship at Holley for Andie Carpenter
HOLLEY – A Holley woman didn’t let vascular Ehlers-Danlos syndrome keep her from an active student life at Holley Central School and then in college, where she was majoring in a radiological technology program.
Andie Carpenter, 20, passed away unexpectedly on Jan. 31. She was in her last semester at North Country Community College in Saranac Lake. She died after an artery ruptured.
“She was a bright light,” said her mother, Maria Vowles. “She lit up a room.”
Andie wasn’t diagnosed with Ehlers-Danlos until she was 15. That diagnosis followed years of doctor visits when Andie and her family knew something was wrong. She bruised easily. Her skin stretched far more than a typical person’s. She slept with her eyes open.
These are tell-tale signs of Ehlers-Danlos, which doesn’t have a cure. Ehlers-Danlos weakens the connective tissues of the body. It also can weaken blood vessels and organs.
Andie and her family were grateful for the diagnosis, and Andie refused to lay low in life.
“She didn’t like to be called fragile or delicate,” said her stepmother, Mandy Carpenter. “She didn’t want to be thought of as weak. She was a strong girl. She never let anything get in her way.”
Andie was strongly urged by doctors not to play contact sports. Even a small collision could turn into a big bruise.
So she ran cross country, a demanding sport where the races are 3.1 miles with training runs even farther. She ran hard, even with swollen feet.
“She liked being a part of the team and the friendship,” said her father, Josh Carpenter.
Andie also played tennis and briefly tried basketball for Holley. She gave up basketball after tearing ligaments in her knee.
She enjoyed photography and taking hikes in nature. She wanted to be a 46er, climbing all of the mountain peaks in the Adirondacks. She was partway on that goal.
Andie researched her college major, and picked the rigorous radiological technology program, which includes taking CAT scans. Only 22 students get into the program at North Country Community College, and many don’t get through the program, which includes 1,500 hours in clinical training and work on site at radiologic technology departments across the North Country.
Andie did her training at the Samaritan Medical Center in Watertown, Canton-Potsdam Hospital and the Adirondack Medical Center in Saranac Lake.
“She worked hard and focused on her studies,” her mother said. “She was three months from graduating.”
She was living in an apartment. She was a responsible adult, making sure all of her bills were paid. She was looking forward to starting her career.
Andie wrote this in her memoir about living with the disease:
“Even though I found out that I have (vascular) Ehlers Danlos, I still act like the same person I use to be. I still participate in many activities and enjoy life. You either accept the fact that you have the disorder and go on with your life like a normal person or worry about what could happen and not enjoy life at all. I chose to accept that I have it and go on with my days without worrying about it.”
About 400 people attended her calling hours last month at a Brockport funeral home. The family is thankful for the outpouring of support.
“We’ve been overwhelmed by the amount of love from the Holley community,” Mandy Carpenter said.
The family is establishing scholarships in Andie’s memory and is planning upcoming fundraisers.
The first event will be June 9 at World Gym in Rochester, 1717 East Ave. Participants can donate in a fun and challenging workout. Andie’s mother is a member of this gym.
There will be a 5K fun run/1-mile walk on July 13 in Holley. The course will go by the Holley Waterfalls and is similar to the route for the Holley cross country team, a course she ran hundreds of times. The 5K starts at 10 a.m. with the walk beginning at 10:10 a.m. Check in is at the Holley gazebo by the canal park.
The North Country Community College is establishing a memorial scholarship for Andie Carpenter. The scholarship descriptions says, “Andie was a bubbly person who made everyone smile a bit more each and every day. This award is given to a hard-working, determined, and driven to succeed graduate, who is always willing to go the extra mile to help others. The recipient of this award is a lot like Andie; he or she has a positive outlook on life, who is always making those around them happier.”
Andie’s family and friends also are creating a scholarship through the Holley Central School. They are accepting donations to the Andie Mae Carpenter Scholarship Fund, Holley Central School District, 3800 North Main Street, Holley, NY 14470.
The family also is raising money for the Center for Vascular Ehlers- Danlos Syndrome Research, c/o Hal Dietz, MD, Institute of Genetic Medicine fund for Johns Hopkins Medicine, 855 North Wolfe Street, Rangos 550, Baltimore, MD 21205. (www.hopkinsmedicine.org).