I received a call from CJs school on 10/20/25 saying that he was complaining that it was hard to breathe and his heart rate was high after running the mile in PE. This is a kid with severe ADHD, who plays soccer every week and runs constantly without complaint. I figured he just wanted out of school and I didnt mind, he has straight As and rarely misses school.

I picked him up and as were walking out, I noticed him stumbling, getting pale, breathing heavier, and his speech wasn't making sense. I had a bad feeling and rushed to the ER. When we got there he was still breathing heavy, holding his chest, and could barely make a sentence without running out of breath. Dr's said that it could be an asthma attack but I told them he didn't have asthma. They said they'd give him a breathing treatment just in case and then get us ready for discharge and advised to follow up with his primary tomorrow check for asthma. They did an EKG and breathing treatment. After the breathing treatment he fell asleep.

Then my worst nightmare happened. A different doctor came in and woke him up asking how he was feeling. The doctor then began badgering me about family health issues and "unexplained youth deaths". I told them we had none of those but lots of family history for a variety of things. I told them I was pending results but cj didn't know about them. He pressed me to talk about them so I told them what I could hoping cj didn't hear. He didn't, he was still waking up and confused. I was badgered about family history for what seemed like an hour and began to have a panic attack but tried really hard to keep myself together to not scare CJ. I contacted my mom, CJs dad, and his mom for more info on family history, still not knowing why they were asking. The doctor advised that they'd do bloodwork to check for electrolyte imbalances and left the room.

When the phlebotomist came in she asked CJ his name and DOB. All CJ could say was "Mcguire 6". This concerned me but I still didn't know what was happening and he was still trying to wake up fully.

The doctors returned and CJ was diagnosed with Long QT Syndrome. This is something I've never heard of. They questioned about family history because it's either genetic or caused by an electrolyte imbalance. His electrolytes were fine. The reason they questioned about "unexplained youth deaths" is because this usually doesn't have symptoms and is mostly caught on EKGs and they aren't routine for children without chest pain.

The doctors had just told me that he has a very rare heart condition that could've put him in cardiac arrest.

Now he can't play soccer without being under direct care of a pediatric cardiologist.

As a mom, this was one of the worst feelings and experiences. He doesn't understand the severity and I can't explain it without crying or scaring him.

We are in the most vulnerable part of our lives. I have to take care of my mental and physical health while ensuring that I can get him the care he needs and be there for him.

While we do hold insurance, im learning it only covers so much. So far we already owe hundreds in ER visits, primary doctor appointments and labwork. This is just the beginning.

We were already struggling financially and now our future holds serious uncertainty with medical costs for cardiologist appointments and further testing. We just need a little help for future co-pays, tests, prescriptions, and possible travel expenses to ensure he gets the best care possible.