Name: Brody Navarro
Which SADS condition do you have? Long QT Syndrome (calm 1 gene)
When were you diagnosed? May 11, 2016 age 5
How are you treated? ICD and a beta blocker (propranolol)
How/when were you diagnosed?
Brody was swimming in our backyard when he went into cardiac arrest we had no idea what was happening to him or why it was happening. His grandma was watching him and she rushed him to our neighbor’s house who then performed CPR on him. My 8 year old daughter called 911 while this was happening and as soon as the paramedics took over they used a defibrillator on him. He was then taken to the hospital where the doctors and nurses fought hard to save him and at one point told us they didn’t think he would make it. From there he was taken by helicopter to a local children’s hospital where he was diagnosed. They let us know he needed an ICD in place and was then sent to Stanford for surgery.
What has been the biggest challenge you’ve faced in living with your diagnosis?
It is hard for him to understand his limitations. We try to let him do as much as he can to have a fun normal childhood but getting him to take breaks, telling him he can’t jump on a trampoline at a kids party or making him wear a life jacket in a pool even though he knows how to swim and having to sit out on rides at an amusement park is hard.
What is one positive thing that has come out of your diagnosis?
We value life so much more. We know how lucky we are to still have him and we try to make every day special.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
It may seem like your life is turned upside down at the moment but it will get easier and you will learn how to live with your new normal.
What does your day-to-day life look like?
Brody lives his life the same as he did before, just with limitations. He has to have some extra help in school because he does have a learning disability. After his episode he would have minor blank seizures and was having a difficult time learning. Having loss of blood flow to the brain also caused some short term memory loss so we have to repeat things for him to understand, but he has an amazing teacher that has helped him so much. He is no longer having the seizures and can even read a full child’s book.
What are your favorite hobbies and activities?
Brody still loves swimming even though he has limitations. He loves playing tag, tetherball and any outdoor activities. He loves the Hulk and Iron Man. We say he is just like these super heroes because he can’t let his heart rate go up like the Hulk and he has a device that controls his heart like Iron Man. He just got back from his Make-A-Wish Disneyworld vacation and couldn’t be happier.
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