Family’s research bid into condition

(l-r) Jason and Marrissa Walker, Moorends are doing the Great Yorkshire Run in aid of Sturge Weber Syndrome, a coniditon that their daughter Kloise, 8, has. Picture: Andrew Roe
(l-r) Jason and Marrissa Walker, Moorends are doing the Great Yorkshire Run in aid of Sturge Weber Syndrome, a coniditon that their daughter Kloise, 8, has. Picture: Andrew Roe

A MUM and dad are putting on their running shoes to raise money for research into a rare condition affecting their daughter.

Kloise Walker, eight, suffers from Sturge Weber Syndrome (SWS) which can leave sufferers living with epilepsy and learning difficulties.

The syndrome affects both the skin and central nervous system and is characterised by an abnormality of the blood vessels caused by non-cancerous tumours.

A symptom is a ‘port wine stain’ on the face when a child is born, but this was never mentioned to parents Marissa and Jason Walker when Kloise was born.

Marissa, 32, of The Avenue, Moorends, said: “We were just told it was a birth mark when she was born in 2003, and then later found out it was a port wine stain and that she could have laser surgery to lessen it.

“Kloise had six treatments, but it started to cause scarring so it had to be postponed.”

At three-years-old Kloise had a routine eye check, which showed up a problem with her left eye.

Marissa, a shop assistant, added: “We were sent for further tests, which showed that Kloise had glaucoma because of the port wine stain, and she now has to wear glasses to help with her vision.

“Kloise has to go for yearly check ups with a neurologist now, after scans on her brain showed that there was a pool of fluid present on her brain.

“Then at one routine appointment with the neurologist, he mentioned SWS and we’d never heard of it. He said that all the things she had pointed to her having it.

“Kloise is affected, but it is quite mild compared to how it could affect her. She hasn’t suffered any seizures or learning difficulties, but this is monitored.

“We didn’t know anything about SWS at all, and out of the doctors at our local surgery, only one doctor had heard of it.

“Despite the syndrome Kloise is a confident young girl and does not let her on-going problems affect her daily life.

“She has learnt to ignore the glances and comments, however she does find some of the comments upsetting, but she can also find some on the funny side.”

Marissa and Jason, 35, are running the 10k Great Yorkshire Run in Sheffield on October 9 in aid of the Sturge Weber charity.

Marissa added: “We want to raise the profile of the syndrome so that more people know about it and can recognise the symptoms and deal with it sooner.”

Visit www.justgiving.com/Marissa-Walker to donate.