In 2012, Caleb began to feel dizzy and experienced tunnel vision while playing sports. Blood tests revealed he has Long QT Syndrome - a genetic condition

Caleb’s family has the genetic heart disease, Long QT Syndrome. Caleb has been carefully monitored for most of his life for any signs of the condition.

To manage his condition, Caleb requires daily medication that helps to slow down and regulate his heartbeat. He experiences a number of side effects from his medicine, including extreme fatigue and insomnia. Caleb’s medication also doesn’t allow him to experience an accelerated heart rate, so he has had to opt out of sports.

Despite all of this, Caleb has seen other people fight for their lives with cancer and other diseases, so knows that he has a choice to help save himself, so he is grateful.

In July 2014 Caleb started having nocturnal seizures. LQT can cause seizures but Caleb was convinced it wasn’t the same and after a lot of tests Caleb has been extremely unlucky and been diagnosed with epilepsy. He is ok about it and knows his medication will control his seizures.

Caleb has an extremely large family. He lives with his mum and his dad and his two younger sisters Samantha and Devon. He also has brothers in Australia.

He loves being adventurous and goes hunting a lot with his granddad. Caleb enjoys fishing, water-skiing, archery, camping and the beach.

Cure Kids funding has enabled a national screening program of all young sudden deaths in New Zealand. As a result, hundreds of young people living with Long QT have been identified and treated before they experience potentially life-threatening symptoms.

Long QT is a genetic condition. Click here to read more about the research we’re funding into a wide range of genetic conditions.

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