In recognition of Father’s Day, TREND Community honors community member Rick Karl. Rick is the president of the Cure for Tay-Sachs organization (www.curetaysachs.org) which has raised over 4 Million Dollars and funded 9 research grants. He has partnered with TREND to help us study the impact of Tanganil on those living with Tay-Sachs Disease. He is working to find every treatment possible for Tay-Sachs children to honor his daughter.
Rick Karl always wanted to be a parent. A dad. When he met his partner, Bruce Steiger, they discussed the idea of children, and both agreed they wanted many! After three years and eight surrogacy attempts, Krystie Anna was born in 2006 on his birthday. In 2007, she was diagnosed with Tay-Sachs disease, a rare genetic disorder that neither Rick or the egg donor were tested for because there was no reason to suspect they might be carriers.
Despite or because of this diagnosis, Rick and Bruce were amazing fathers to their beautiful little girl. Although she couldn’t talk, she expressed her delight with her eyes and her smile, and they made sure to bring those out all the time. She lived a full and happy life in her 9 years, doing many wonderful activities including watching a Chorus rehearse and loving all of their rousing songs, some of which were sung at her funeral.
Rick and Bruce chronicled Krystie’s journey in a CaringBridge blog that had over 200,000 visits and is still beautiful to read today. The CaringBridge blog has months with no entries when everything was going well, entries about times in the hospital when the disease created problems with her breathing or her liver, and entries about wonderful trips, including trips to Maui and Key West. Krystie, like most of us, loved the beach and swimming. In 2015, a heartbreaking entry mentions that Krystie died peacefully in her car seat on the way to the Zoo. Even though I never met her, I can’t help wishing it was on the way back, so she would have had the fun of seeing the animals one more time.
Most children with Tay-Sachs are only expected to live until they are 5 years old, if they even make it that far. So, nine years is a long life for Krystie, and may be because her Dads quit their jobs, moved across the country and worked closely with doctors to find every treatment possible. We are so pleased to be working with two such wonderful people and parents.
If you or someone you love is living with GM1 or GM2 Gangliosidoses please consider joining our initiative. Learn more here: news.trend.community/home/gm1-gm2-tanganil-health-initiative.