by Annie Hill | Jul 5, 2019 | AEDs, ICD, Long QT Syndrome, SADS Spotlight, Timothy Syndrome
Name: Aurora Age: 2Which SADS condition do you have? Timothy SyndromeWhen were you diagnosed? 10 months for LQTS & 1 year for Timothy Syndrome How are you treated? Beta blocker (propranolol), ICD (implanted February 19, 2019) How/when were you diagnosed?...
by Erin McGuire Clark | May 23, 2019 | AEDs, Long QT Syndrome, Schools
As a LQT patient-parent as well as an educator-advocate of students facing chronic medical conditions in a large school district, I have learned that “peace of mind” can go a long way in learning to thrive despite medical challenges. We often feel sidelined by...
by Lisa Peterson | Apr 23, 2019 | AEDs, Long QT Syndrome, Sports/Exercise, Support Groups
If you can’t fly. Run.If you can’t run. Walk. If you can’t walk. Crawl.But by all means keep moving. ~Martin Luther King Jr. Nothing about a new diagnosis is easy. There are so many questions, so many fears, so many life changes that happen. When our...
by Danielle Mundondo | Apr 3, 2019 | AEDs, Long QT Syndrome, Parenting
She appears “normal” and healthy on the outside. She does everything your 4 year old does. She laughs the same. She throws a temper tantrum the same. She thinks potty humor is the funniest thing ever just the same. She comes into your room 20 times every night before...
by Melissa Russom | Mar 1, 2019 | Advocacy, AEDs
Do you notice AEDs in your community? If you’re at work, out shopping, working out or participating in your everyday activities – could you find the AED immediately if someone were to need it? I’m the mom of two girls with Long QT and I wasn’t in the habit of...
