Help Jojo: Urgent AED Needed for Safety

Hello everyone,

On the afternoon of November 10, 2023 every parents biggest nightmare came true. We found our then 3 year old non-verbal autistic son, JoJo, having a seizure in bed. He did not have a history of seizures. Other than his autism diagnosis, JoJo was always a very vibrant and healthy child. He was transported via ambulance to the nearest children's hospital where he remained unresponsive for over 12 hours. He underwent numerous test, bloodwork and a spinal tap. As a mom, I was so scared, watching our baby just lay there. I can't even imagine what my husband, Jonathan, was feeling, as he had to stay home with our then 2 year old little boy.

During this time, the Dr's and nurses did an amazing job at caring for our precious boy. It was during this hospital stay that the on call pediatrician heard an abnormal rhythm in JoJo's heart. He asked if we were aware that he had a heart murmur. We did not. Once again this was news to us. I remained calm, being a medical assistant I knew that was a common occurrence in children. The Dr ordered and echocardiogram just to make sure everything was ok. When the results came in it showed that JoJo has a discrete subaortic membrane with stenosis. This fibrous membrane makes it hard for blood to flow between the aorta and the left ventricle. Causing chest pain, shortness of breath and fainting.

Since his diagnosis of discrete subaortic stenosis he has had echocardiograms every 6 months to measure the growth of the membrane. His last echo was the past February, this time around they also added a 12 lead EKG, the which showed that JoJo has what's called Prolonged QT Syndrome. This means that his heart takes long to recharge between beats. This condition can cause, palpitations, fainting, seizures and sudden cardiac arrest. It is recommended that we keep and AED Device (defibrillator) on hand at all times.

We are looking for help to raise funds for the purchase of an FAA approved pediatric AED device, along with help for travel expenses and medical treatments incurred due to JoJo's medical conditions.

If donating isn't possible, I encourage you to share with your friends and family.

We are grateful for any donations and/or shares, and value everyone's support.

With Love & Gratitude

The Velez-Bey Family