After being diagnosed with a rare condition, Andrew Reynolds vowed to make a difference. At the Brain Injury Association of New York State’s advocacy day in Albany on Saint Patrick’s Day, Reynolds’ family will give that mission voice.
Andrew Reynolds was diagnosed with Cowden syndrome in 2021, when he was 25 years old.
The condition is a rare, genetically inherited disorder that causes noncancerous growths and increases the risk of certain cancers.
In the months leading up to his diagnosis, Reynolds experienced a range of symptoms – coughing, choking, and passing out when trying to eat. That’s according to his mother, Kellie Reynolds.
Periodic medical visits yielded no answers until he found himself at Saint Peter’s Hospital. During his stay, Andrew experienced a seizure and was transferred to Albany Medical Center’s Intensive Care Unit.
“And then next thing you know, he was paralyzed from the neck down,” Kellie Reynolds said.
Kellie says doctors rushed her son into emergency surgery.
“So, they had to go in and take as much of the tumor out of his brain as they could so that he would be able to at least gain motion again,” Kellie said.
She said her son then briefly stayed at Sunnyview Rehabilitation Hospital in Schenectady before returning home.
Kellie Reynolds and her husband helped care for their son.
“I mean it was just very difficult, because I mean during that time period we’ve had the ambulance at the house a couple times,” Kellie said.
Then, while Andrew was sick, Kellie learned through genetic testing that she has the same condition as her son.
She blamed herself for her son’s medical condition.
“Again, I felt it was all my fault, because being hereditary that it was from my side of the family. And I’m like ‘gee if we would have known that, I mean I love Andrew to death. I highly doubt we would have had kids,” Kellie Reynolds said.
Andrew Reynolds died in December. But before he did, he sought to be an advocate for people with brain injuries.
Christina Labeau, the Brain Injury Association of New York State’s director of Advocacy and Engagement, said Andrew would message her asking how he could help.
“I have messages from him, Facebook messages, and text messages saying ‘what more can I do, what members of Congress can I write to?’ I brought Kellie and Andrew to talk with Congressman [Paul] Tonko and he sat with us for over an hour and he really had a joy of advocating,” Labeau said.
Andrew Reynolds also wrote a book detailing his experience living with Cowden syndrome. The Amazon listing showcases a quote written by Andrew that reads, in part, “I wanted to prove that even though I have a brain injury I'm still able to do something productive with my life now.”
Kellie Reynolds will share words as a keynote speaker at the Advocacy Day Press Conference March 17 as part of an effort to call on state legislators to include funding for The Continuum of Care for Neuro-Resource Facilitation Program and the Concussion Outreach Prevention Education, or COPE Program. Both initiatives are run by the brain association.
Lebeau says the Continuum of Care for Neuro-Resource Facilitation program is necessary, especially in a medical system in which finding the right resources can be difficult for people with brain injuries.
“One person can need one type of doctor or therapy, where another can need something completely different,” Labeau said.
The idea behind the effort is to help people find the resources after leaving the hospital – an aspect of dealing with a brain injury Lebeau says can be confusing.
“As much as the hospital staff wants to be able to assist, it’s a very confusing structure, no brain injury is alike. So, one person can need one type of doctor or therapy where another can need something completely different,” Lebeau said.
Kellie Reynolds said she plans on becoming “Andrew’s voice” when she speaks at the Legislative Office Building in Albany on St. Patrick’s Day.
“And talk about where he stood, what he stands for, and get the message out there about Cowden syndrome because a lot of people don’t know about that,” Kellie Reynolds said.
