Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today?

It was so common for our family to fall over having seizures, and back in the 1960s, they weren’t thinking about the heart. Long QT Syndrome hadn’t even been discovered yet – it was actually discovered three years after my daughter was born.

My sister, mother and I all had seizures. Back in 1983, my sister went to a doctor. The doctor said, it appears to be your heart – and we looked at him like he’d lost his mind. But nothing came of it; unfortunately, the seizures continued, especially in my children, who were being treated at the time with seizure medication.

In April of 2000, my son’s wife told me that he’d recently had a seizure. That Friday, I spoke to my son for the last time, and told him I’d be over in the morning to pick up his baby, Alexis. In the morning, the alarm clock went off, and he went into a seizure and couldn’t come back from it.

I made it through the next two years – struggling, of course – when my daughter became pregnant with my granddaughter, Jessica. I was panicking because I knew something was medically wrong with my family, but I didn’t know what it was. I knew she’d be okay while she was pregnant, but I was worried about the postpartum period. I had almost died after having my son – I crawled away from him once to have a seizure after he was born.

In November of 2001, my daughter gave birth and, in the summer of 2002, she starting having fainting spells. We’d call 911 and they’d treat her like nothing was wrong. The doctors were at a loss. On July 15 of 2002, she died in the hospital.

Now I was raising her baby, who was 8 months old, and my son’s baby, Alexis, who was three. In May of 2003, my mom called and said she’s wasn’t feeling good, and her heart was beating really fast. My stepdad took her to the hospital, where she was rushed to intensive care and diagnosed with LQTS. He said it commonly showed up in young people, and all of the sudden, after all these years, I had an answer.

My sister and I both got tested immediately with an EKG, and were put on beta blockers after being diagnosed with LQTS. We got ICDs – we even shared the recovery room. My grandchildren both tested positive, as has one of my great-grandchildren.

What advice would you share with other parents who have lost a child to an arrhythmia condition?

When you’ve lost a child, your whole world has been turned completely upside down. By the fifth or sixth year after it happened, I was putting one foot in front of the other. I used to cry almost daily, but now I don’t – you have to find a way to keep your children’s memory alive. For me, the only way to keep going was to help raise awareness and help save someone else’s child – that gives me fulfillment more than anything, and I think it’s what my kids would want.

Getting through grief is different for each person. You have to do it on your own. You can scream, cry, hit walls – whatever helps. I used to have lunch at the cemetery every day; I would buy my son stuff; I had 50 pictures of him on the wall – and when my daughter died, I knew if I didn’t change gears, I wouldn’t be able to go on. I was having memorials every morning, listening to the 911 tape over and over, going to fire stations to see if they’d done anything wrong. When you’re distraught, your mind is going haywire. There’s no rhyme or reason.

If you’re in this situation, I truly get what you’re going through. If someone offers help, take it and run. You can only relive what happened so many times and after 5 years, I couldn’t do it anymore. Reliving it is like opening old wounds.

I also advise others to seek professional help – this is not a normal loss; live one day at a time; don’t blame yourself or feel guilty for living; allow yourself time to grieve; honor your child’s memory; and join a support group with others that understand. People do care. If I can lose two children, and go on to raise grandkids and great-grandkids, you can too. You just have to find your inner strength somewhere.

What advice would you give to someone who was newly diagnosed with a SADS condition?

People need to realize that LQTS comes from somewhere. Get genetically tested, and do not take over the counter medications without talking to the pharmacist or checking if it will prolong your QT. I’d go to the doctor and they’d prescribe me something I couldn’t take – you have to be your own advocate. Keep up to date on the research, because it changes a lot. And if your doctor recommends an ICD, get it as soon as possible. Take your medication every single day.

If you have a young child with Type 2 LQTS in school, I always have my grandkids removed from class when there’s a fire drill happening, since startle can cause an episode. If you hear about someone else’s kid fainting or having seizures or any of the symptoms, tell them to go to an EP and get a specialist.

How has the SADS Foundation been helpful for you and your family?

I found SADS shortly after everything happened. I used to sit there for days trying to find some place that could help me. I’ve met friends who have lost young child too. Our loss of children at a young age to this condition is a different journey than losing someone who’s older. Helping others who’ve been through this is where my heart is.

If you or your child has symptoms of a SADS condition, please reach out to us – we’re here to help.