by Tisha | Jan 30, 2020 | Advocacy, Brugada Syndrome, Connecting with others, Heart Hero, ICD, Parenting, Rare Disease, SADS Spotlight, Sports/Exercise
Name: Tisha M. Age: 36 y/o Which SADS condition do you have? Brugada Syndrome When were you diagnosed? 12/27/19 How are you treated? (Beta blocker, ICD, etc.) ICD How/when were you diagnosed? I went to Urgent Care on 12/27/19 with complaints...
by Jen Wolfram | Oct 16, 2019 | Awareness, CPR, ICD, LCSD, Parenting, SADS Spotlight, Sudden Cardiac Arrest, Support Groups
Name: Lila Wolfram Age: 4When was your SCA? October 2015 (8 months old)Which SADS condition do you have? Idiopathic Ventricular TachycardiaHow are you treated? Lila has a Medtronic Evera ICD. She had a left side sympathetic denervation (LCSD) performed at 10 months...
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 Erin McGuire Clark | Aug 27, 2018 | Parenting, Schools
Being “sidelined” from chronic medical condition symptoms can be both overwhelming and depressing. Though the comfort zone of home will inevitably lure us from school toward the “path of least resistance” on those rough days, unfortunately, the more you miss school,...
by Kellie Moore | Aug 5, 2018 | Long QT Syndrome, Parenting
When life becomes a blur of sleepless nights, round-the-clock feedings, diaper changes, and newborn snuggles, it’s easy to put aside self-care and focus all of our energy on the new baby. While it might seem noble to sacrifice our own well-being, it’s not healthy for...
by Kellie Moore | Apr 13, 2018 | Advocacy, Fundraising, Long QT Syndrome, Parenting, Timothy Syndrome
Fundraisers don’t have to be big or expensive to make a difference—they can be as simple as having people over for milk and cookies. That’s something Mary Ann Ciciarelli knows to be true. For the past seven years, her family has hosted a milk-and-cookies fundraiser in...
