Family Getaway
By Kevin Clark
September 20, 2018
Every spring and fall, Victory Junction hosts weekend camp sessions where kids with chronic medical conditions can bring their whole family for a fun time together.
Weekend camps gives children with serious illnesses the chance to relax and have fun; providing their families a much-needed respite from their daily routines and struggles.
For the Graves family of Huntsville, Alabama, coping with Fabry Disease is just part of daily life. Katherine Graves has a family history with Fabry Disease, so it wasn’t a surprise when she was diagnosed with the illness at age 32.
In spite of the difficulties from living with Fabry, Katherine and her husband, Brandon, have tried to live full and happy lives. The couple have two children – Harrison and Morgan, ages nine and five respectively.
Harrison was also diagnosed with Fabry Disease when he was six years old. The blood transfusions their son must undergo as part of his treatment have forced the Graves to make adjustments to an already hectic family life, but Katherine says they take it all in stride. “We manage the best we can.”
Part of the difficulty of living with Fabry disease is the inability to sweat, preventing children like Harrison from playing most sports, an experience Brandon laments he can’t share with his son. “Sports is what I did growing up, so it’s hard to connect. All I know is sports.”
The Graves were first introduced to Victory Junction through their patient education liaison at Genzyme, a biotechnology company serving patients with rare diseases such as Fabry. “She told us about it and really pushed us to apply,” Katherine added.
“I love it just for my son coming and having the interaction.”
In the fall of 2017 the Graves attended their first family weekend camp at Victory Junction, a special session facilitated in partnership with The National Fabry Disease Foundation. The weekend gave them a chance to have fun together as a family and relate to other families living with the same issues. “I love it just for my son coming and having the interaction,” Katherine said. “I’m so glad we came.”
Victory Junction helps many children, like Harrison, to make lifelong friendships with children dealing with the same diagnosis.
