WHEN little Jessica Goddard was diagnosed with a rare genetic heart condition, her mum Rebekah was prepared for all the challenges that were in store.

For Rebekah was diagnosed with the same condition known as Long QT Syndrome at the age of 25, after suffering blackouts and seizures for over a decade.

Long QT is an inherited genetic disorder but tests showed Rebekah’s parents were clear, so the defective gene for her was a spontaneous mutation.

Rebekah, now 37, who lives with her husband Ian and their two daughters in Sturminster Newton, explains: “In my case the seizures and events have always happened first thing in the morning and have been triggered by an alarm clock causing a sudden burst of adrenaline triggering a potentially fatal attack.”

Her diagnosis in late July 2001 came just two months before her wedding to Ian.

Rebekah was eager to start a family but there was also a 50:50 chance she could pass the condition onto her children, but pre-natal screening was unavailable.

Rebekah says: “All I ever wanted was to have children.

“When I got pregnant with both Grace and Jessica I was scared, but forewarned is forearmed and we knew the signs to look out for.”

The girls both had genetic testing when just a few months old, but it wasn’t until Jessica was two and a half that the family got the results which showed she had inherited the condition.

Rebekah says: “Initially I didn’t cope well; I picked Jessica up and sobbed and sobbed.

“However, Jessica is a tough cookie and I have been so amazed at how well she has coped.”

To protect her heart she takes beta blockers and has a special heart monitor.

Rebekah says: “I don’t want to wrap Jessica up in cotton wool and I can’t be with her every second of every day but I still worry.”

But Jessica and her mum don’t let the condition stop them living life to the full.

The family have been to California to visit Disneyland, although they have to avoid any roller coasters.

Jessica also loves dancing.

Rebekah added: “I thank my lucky stars every day.

“There are other people who go to sleep and never wake up.

“I want to help other people now so they know support is out there and they are not alone.

“My hope is that genetic research develops so that in the future Jessica can have screening when she starts her own family.”

  • JESSICA, now aged six, is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day.

Now in its 18th year, Jeans for Genes Day is on Friday, September 20 and invites everyone to wear their jeans to work or school in return for a donation.

For details see jeansforgenesday. org