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...
by Deb Thibodeau | Feb 14, 2018 | Advocacy, HCM, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
My heart breaks every time that I hear of a child dying suddenly from an undetected heart condition. How does one recover from knowing that if a diagnosis was made, their child may be with them today? I don’t have that answer, but unbelievably found myself...
by Kathryn Young | Feb 10, 2018 | Long QT Syndrome, Parenting
Note from SADS Channel: we recently posed the question of ‘how does your family handle deciding if meds are ok to take?’ to several LQTS families. Their answers can be found here. This is Kat’s answer, which we thought needed to be its own post!...
by Erin McGuire Clark | Jan 23, 2018 | ICD, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
WHEN PIGS FLY As the loud telephone ring startles me from my sleep, I inexplicably collapse to the floor and am rushed to the hospital where my heart monitor repeatedly goes crazy with bouts of cardiac arrest as I am inappropriately treated for a gamut of suspected...
by Kellie Moore | Jan 13, 2018 | ICD, Long QT Syndrome, Online Patient Communities, Parenting
For Natalie Moye, what started as a basic wellness check led to a life-changing diagnosis. She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy...
by Kellie Moore | Dec 4, 2017 | Long QT Syndrome, Parenting
When I was pregnant with my daughter, I knew there was a chance she would have Long QT Syndrome. I have it, both of my siblings have it, and my mom has it. So do my grandma and some of her siblings. For us, Long QT Syndrome is a normal part of life. So as my husband...
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