Help us save the lives of more vulnerable babies like Scarlett

"The first few weeks with a new baby are meant to be the happiest time of your lives, but we went through hell.
I had to avoid surprising Scarlett or touching her too much. I couldn’t even breastfeed my daughter, her nose and mouth were so sensitive, touching them would trigger convulsions."
Abbie, Scarlett's mother.

Scarlett from Grimsby (pictured here) is one of those gorgeous babies you just want to hug. But a hug in the first few weeks of life could have proved fatal to her because she was born with a rare brain disorder called hyperekplexia or startle disease.

If Scarlett is startled by noises or touch she reacts in an exaggerated way becoming rigid or unable to move. Sometimes she’ll stop breathing – so it could be fatal.

Very little is known about startle disease, so it took doctors two weeks to diagnose Scarlett. During that time, her life was in terrible danger. A delay in diagnosis can lead to a baby not receiving the best care – potentially putting their lives at risk.

Right now, Action Medical Research is supporting researchers in London and Swansea who are looking for more changes in genes that cause startle disease.

An early diagnosis for children with this rare disease can increase a child’s chances of survival. Will you help us find the answers?

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