Can you tell me a little bit about your family’s SADS journey?

I have one surviving daughter, who is 14 and has Long QT Syndrome. In my family, we have an aunt with Long QT Syndrome – who is the only reason that I ever knew my son had it, which led to me knowing I had it. In 1993 she had black-outs in her mid-thirties. We thought she was having seizures. She was diagnosed with Wolff-Parkinson-White initially but after more testing, was diagnosed with LQTS. It was advised that we get her siblings and children EKGs. I got them when I was a teenager, and it came back fine – everyone’s came back fine except for one of her sons.

In 2010 my son Elijah – who was 8, almost 9 – was running laps in school during PE in 3rd grade and he collapsed briefly. It was September, and it was hot. The school called me, and didn’t call an ambulance – they thought it was the heat. He went to the emergency room and they did testing, including bloodwork and testing for dehydration and an EEG to check for brain activity – and everything checked out just fine. They said it was dehydration. After talking to my aunt, she said, “Hey, Keona, why don’t you ask to see a pediatric cardiologist?” and I said okay, sure, let’s look into that. I talked to a pediatrician and got a referral. They did an EKG and holter and it all came back normal. Then my aunt had genetic testing done, and said we should check for the two genes that came back from her, and they came back positive. That’s how we found out. Lots of people in my family were diagnosed after my son – only through genetic testing.

I’d love to hear a little more about Elijah. What was he like? 

Elijah was a really good kid, and I’m not just saying that because I was his mom – others that knew him shared the same sentiment. He was really mannerable, got good grades, and was super rambunctious. He loved sports from the time he could hold a ball. He was kind of competitive, and he was a joker – he had a very good sense of humor and loved to play jokes on everyone. But at the same time, he cared about a lot of people.

What’s your favorite memory of Elijah? 

We teach our children to have a heart of service and give back. We would always put together care kits to give to shelters – blankets, toiletries. I remember when McDonald’s had those Monopoly pieces. Elijah saw homeless men on the side of the road and asked if we could give them money (he always wanted to do something to help). We didn’t have cash, and he was so sad – he looked around the car and said, “What about these Monopoly pieces?”, which were for free food, so we pulled over and we gave them the free food pieces. He was really thoughtful, and looked out for people. He was a boy’s boy.

I’d love to hear more about Chloe, too. What was she like? 

She was a baby, only 5 when she passed away. She was 8 days old when Elijah passed away, and provided for our family such a sense of hope when we were in such a dark place. Losing a child is hard – and that doesn’t even suffice to say how difficult it is. She was so sweet and was a very bright light in our family. She was nurturing, like a little mom.

And what is your favorite memory of Chloe?

If you were sick, she would get her little teapot and add shampoo and stuff and say she was making a potion to make you feel better. She was trying to take care of us. She always said she wanted to be a mommy and have 10 kids and a truck like mine – which is a Ford Expedition – but she wanted it to be purple, because that was her favorite color. She was a very sweet girlie-girl. She loved unicorns and lip gloss. She also loved Super Mario Brothers, and had a crush on Mario. She was just a very sweet child.

Can you tell me a little more about the what happened after your children passed away?

I don’t want another parent to experience the same pain of losing their child. I wanted to take my pain and channel it into something positive to help others in honor of my children, and also to be an example of my surviving daughter on how to handle adversity in life.

I wanted to do something to raise awareness of LQTS. With both of my children, when the school called 911, the operators, the EMTs were not familiar with what LQTS is. Same thing with Chloe – she was at a birthday party. She had an AED. Elijah’s doctors never told us to get an AED, they said he was low risk and gave him beta blockers, but we didn’t know anything about an AED. After his passing, we purchased them for both of our girls, one went to school, and one stayed with me and Chloe at all times. At the birthday party there was an AED there, but an off-duty EMT arrived, and others were not aware of her condition. She received CPR and I went to get her AED from the car but the EMT was confused, said she was breathing and so it couldn’t be used. The operator said that too. Because of that lack of knowledge that they had, my daughter lost her life.

I said this has to change, I have to talk to the public and let them know what AEDs are, what LQTS is – we always have to advocate for ourselves at the doctor’s because they haven’t always heard of it, we’ve been prescribed drugs we can’t take, which is why I use the Credible Meds site. The Elijah and Chloe Foundation was born out of hurt and pain and not wanting anyone else to lose their child. I don’t know if the AED would have brought my daughter back, but I was angry we didn’t get to use it.

We want to let people know how they work. We do CPR demonstrations, donate AEDs to families who have been denied by insurance. Our surviving daughter has an S-ICD, just so she won’t have to rely on outside intervention in case she ever has an incident. We are partnered with the Children’s Heart Foundation, who refers families to us who have been denied an AED by insurance. We gift them with AEDs, gift them a class with the American Red Cross – they show they’ve completed the class and we give them the device. We place AEDs too – at the musical theatre my daughter goes to, places kids might be active – and do demonstrations, make sure that people are prepared.

Tell me a little more about your relationship with the SADS Foundation. How did you find the SADS Foundation, and how has it been helpful to you?

SADS got us an appointment with Dr. Ackerman. After Chloe passed away, we reran genetics because I was devastated and did not understand – they were getting EKGs, echoes, and I’m fine, so why are my children that are treated going into SCA? Initially we were told it was LQTS Type 1, but this time it came back that it was not Type 1. It is the KCNQ1 gene, but the following numbers are not the typical variants, so we are a VUS.

We found SADS two years after Elijah passed. I had never heard of them, and found them because of their safe schools program, because I was trying to get Nevada schools to do a Heart Safe Schools program. We became a Heart Sustainer and make monthly donations to help with research, and we’ve even participated in a couple of research studies. We even held a fundraiser.

They got us in quick after Chloe, they quickly got me in contact with Dr. Ackerman and got me an appointment. I’m trying my best to keep my surviving daughter safe and follow the right treatment.

Is there anything in particular you would want other families to know about your story? Any message you would want to pass on? 

I don’t want to spread a message of fear – you can definitely live a full life with LQTS. It’s important to know CPR and where AEDs are in public. Being aware and knowing what you can do can make all the difference. You can live a full life, but be prepared to respond in case of emergency.