The Groel Family
Hello and welcome. I’m Bill and we are the Groel family. Kate and I were married in 1997 and we have three wonderful boys named Connor, Carson, and Clancy. We’ve moved a few times as a family going from the Northeast to Texas, then California, and back to Texas where we are today. Each stop has brought us new experiences with doctors and raising children away from family. Here’s a little more about our story.
Our son Connor was diagnosed with the biochemistry for ALD using cord blood just a few days after he was born. Newborn screening wasn’t available in 1999, but Kate’s family had a history of ALD going back to 1979 so we knew to test for ALD and had some genetic counseling during the pregnancy. After receiving the diagnosis we were thrust into the world of navigating ALD with the help of leading experts at the Kennedy Krieger Institute and Johns Hopkins Hospital in Baltimore, MD. Two years later our middle son Carson was born and thankfully tested negative for ALD. Five years after that, our youngest son Clancy was born and tested positive for ALD. Needless to say, with two of our three boys having the biochemistry for ALD, raising a family proved to have some unique challenges.
Growing up Connor and Clancy had very normal childhoods in terms of school, friends, and activities but with the added precautions and medical requirements that came with an ALD diagnosis. Both Connor and Clancy are cortisone dependent (Addisons) which requires them to take cortisone replacement doses a few times a day to maintain normal levels. They were both participants in the Lorenzo’s Oil Study from just a few years old until their teenage years. This required dietary restrictions, routine blood work, and other annual examinations. They also receive semi-annual MRI’s every year and hold section 504 medical status while in school. Although our boys haven’t needed any special care at school, this allowed Kate and I to formally advocate for their needs if necessary and to educate their teachers and administrators on ALD and potential warning signs.
Most recently our family has completed human leukocyte antigen (HLA) testing to determine if any of us are a match for bone marrow should we ever be in theposition to need a donor. Our middle son Carson proved to be a match for both Connor and Clancy.
Today our boys continue to live as normal a life as possible despite the daily cortisone replacement and periodic MRI’s. Connor is a 2020 graduate of The University of Texas at Austin and Clancy will be attending High School this Fall as a 9th grader and aspires to play basketball for his school team as he did in Junior High. As they’ve gotten older, both boys have taken on a greater responsibility for their health and their understanding of ALD and their future. Unlike at the time of their original diagnosis, the medical protocols and advances supporting the needs of ALD families has never been greater. This gives us great hope for a positive future for them and everyone impacted by this rare disease.