Mum dons her wedding dress for charity funds
DEVOTED Sheffield mum Rachael Winskill slipped back into her wedding dress - to raise charity cash to help her toddler son who is battling one of the world's rarest medical conditions.
The youngster, from Beighton, has a syndrome so unusual it affects only one in every 500,000 people - the equivalent of just one person in the whole of Sheffield.
The two-year old has Sturge-Weber syndrome which causes abnormal blood vessels to develop on the surface of the brain that results in seizures.
Children can go on to develop other health problems over time including a weakness or stiffness affecting one side of the body as well as the eye condition, glaucoma, and learning difficulties.
Most children are diagnosed in the first year of life - but Miles did not have one of the typical signs, a port wine coloured facial birthmark, and so his condition was not picked up until he had a seizure six months ago.
The youngster's condition is being controlled with epilepsy medication - but the treatment can stop working at any time and his tablets would have to be quickly changed.
Mum-of-two Rachael said: "We had never heard of the syndrome and it is rare.The doctors knew what they thought it even though it was rare and when Miles had an MRI scan they were able to confirm it."
The 33-year-old linked up with friend Lucy Ferguson and held a collection at outside Tesco on Abbeydale Road - with the pair of them donning their wedding dresses.
Rachael, a dental technician, also packed bags in Sainsbury's in Archer Road, for shoppers along with 11 friends and relatives to raise funds. Altogether the events raised more than 1,000 for charity Epilepsy UK.
The said: "As it was National Wedding Dress Day in August we decided that it would be a good idea to wear our wedding dresses while doing the collection.
"It was a great day and we all had a lot of fun I am really happy with how much money we have managed to raise," she added.
Rachael believes the condition affects just 140 people in the UK.
It is not known why it occurs but Miles is being treated by experts at Great Ormond Street Hospital in London - one of just two specialist centres in the UK. He is doing well as his seizures are controlled and prevented by medication.
Getting the seizures under control is vital as they can cause permanent damage to the opposite part of the brain leading to weakness in the body.
"We don't know what will happen, they can't give us a prognosis and I find that hard. But we have a regular routine which can help control seizures by making sure he eats regular meals and gets plenty of sleep," said Rachael.
Click here to return to main news index.
What do you think? Add your comment below.