This is a collection of posts by LRG members who have faced the challenges of SDH-deficient GIST and other non KIT/PDGFRA subtypes. If you are interested in sharing your experience for the benefit of others, please email Mary Garland, Director of Communications at mgarland@liferaftgroup.org.
Graduating, Birth, Marriage. What Can’t GISTers do?
Pediatric GISTer, Sile Bao graduated on May 19 and already started her first job at Princeton University in July. Ashley Young Vincent, gave birth to a beautiful baby girl named Lily on June 24. GISTer Mo Collins, married her partner, Alex Skuby on June 25 in a lovely ceremony.
Member Story – Meghan Marre
Mary Marre says her daughter Meghan was diagnosed with GIST in the fall of 2002, just a few weeks before her 21st birthday. All through high school Meghan was anemic; she was also plagued with stomach problems. Each time a doctor would say it was heavy periods, ulcers, heartburn and the like … this to a child who outwardly seemed so healthy.