Mother takes giant leap to raise awareness of rare disease

6:02am Sunday 13th April 2014

By Lydia Johnson

A MOTHER is hoping her fund-raising exploits will raise awareness about a rare disease that has affected her family.

Cerys Goddard says very little is known about Sturge-Weber Syndrome.

So much so that following her son Freddie's diagnosis last month, many nurses, doctors and consultants she has since met had never heard of the condition.

Signs of the skin disorder which can lead to the development of epilepsy, learning disabilities and glaucoma - were apparent from Freddie's birth in the form of a 'port-wine stain' birthmark on his face.

However, the diagnosis still came as a shock.

Cerys, from Whitecross, Hereford, said: "We always knew from when he was born that it was possible he would develop the syndrome, but we were told that if he made it to a year with no seizures he would be okay.

"But at about 20 months old he started having seizures and was diagnosed with epilepsy and then the syndrome.

"Before his diagnosis I made sure I prepared myself for what could happen. I kept in touch with a Sturge-Weber page on Facebook where you can talk to other people who have experience of the condition. We thought the danger had passed."

Despite what the 21 month old has already been through and may still have to face, Cerys says he is a regular little boy, like his brother Finley and half-brother Luis.

"He's happy, mischievous and silly," she added.

"Although he's on medication for his epilepsy, which I think has made him a bit naughty, he's doing great considering what he's been through. Freddie is having lazer treatment on his birthmark and he has many potential challenges ahead of him but he's very brave."

Cerys is hoping to raise £750 for Sturge Weber UK by doing a charity skydive on June 12, while partner Matt will be taking on the Three Peaks Challenge.

To sponsor Cerys visit www.justgiving.com/c-goddard.

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