by kymera_editor | Aug 9, 2019 | Camp, Connecting with others, ICD, LCSD, Long QT Syndrome
Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor about anything...
by kymera_editor | Jul 1, 2019 | Camp, Long QT Syndrome, SADS Spotlight, Sports/Exercise
Name: CJ HeilAge: 20Which SADS condition do you have? Long QT SyndromeWhen were you diagnosed? Oct. 2010How are you treated? Beta Blocker (Nadolol) What has been the biggest challenge you’ve faced in living with your diagnosis? Knowing that even though it’s not...
by kymera_editor | Dec 20, 2018 | Camp, Connecting with others, CPVT, ICD, Long QT Syndrome
Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had...
by kymera_editor | Nov 13, 2017 | Camp, Connecting with others
Camp can be an exciting and formative time during kids’ summer vacations, however for many parents with children with a heart disease, it might not be considered an option. As the director of one of several camps aimed specifically at children with heart disease, I am...
