Name: Ayden

Age: 13

Diagnosis: Long QT type 1; diagnosed at age 12

I was really sick and dehydrated my mom took me to the doctor and they sent me to the ER to get IV fluids. The doctor did an ECG to see if she could give me some medicine to stop puking and noticed an abnormal ECG. Then she referred us to a cardiologist.

I played a lot of sports – I wrestled on a traveling team since I was 5, played baseball, and football. When I saw the cardiologist he did another ECG and it had a prolonged QT interval also and he took me out of sports until we had some more answers. I have an EP now who is awesome! He started me and my sisters (we found out they have LQTS also after genetic tests) on beta blockers. We live in the middle of nowhere so after he was able to help get us AED’s he approved us to do sports while we take betas.

The only thing I really can’t do anymore is swim alone.

The hardest thing about being diagnosed, is that I have always wanted to follow in my dad’s footsteps and join the Army. I want to go to WestPoint and serve in the Army as an officer in the medical field, I still have to talk to a recruiter, but it will be really hard if not impossible to join with LQTS. My dad thinks I can go to school as a civilian and still help. It’s also hard when kids don’t understand my condition, I even had a coach who wouldn’t let me participate in certain things when I had an activity monitor even though the doctor said it was ok.

It helped that my mom and sisters have it too, we can talk about it and the SADS chat group was really cool to get to talk to kids that have the same condition.

I have learned that it’s not something to joke about, I need to take it seriously. Some good things are:   now I am prepared! I take my beta blocker every day and my doctor says that lowers my risk of an episode a lot!

I haven’t been diagnosed for very long, less than a year but I used to take being active and in sports for granted it didn’t seem like a big deal to be involved. After I lost sports for 6 months while we did tests, I missed them a lot. Now I give 100% every practice and event because I am so happy to be able to do them again.

One of my closest friends wanted me to stay for a sleep over and my mom was a little worried, my friend’s mom got CPR certified and showed me her certification and told me that she was trained if anything happened so I didn’t worry.

Sometimes I forget to take my beta blockers, it makes me really nervous!  Now I remind myself every night before bed to remember and take them.

My advice to a newly diagnosed child or teen is to not listen to negative people. Thank your friends and family for supporting you.

(MOM) The encouragement I would give to other parents who have children recently diagnosed would be to join a group, there is so much support and understanding. The people in the groups can be so supportive, even if it’s just to listen to you vent. One piece of advice would be to write your questions down to ask your doctors and to not be afraid to ask them. We are really fortunate to have an amazing EP who takes as much time as it takes at our appointments for me to feel comfortable that my questions have been answered and I understand what our health plans for the kids are.

Quality of life

Physical quality of life:  8

Emotional quality of life:  10

Overall quality of life:  9