Mum’s mission to make more known about rare condition

Gemma Summerfield and her son Zac Freshwater, four
Gemma Summerfield and her son Zac Freshwater, four

A mum from Rothwell has helped raise awareness of her son’s rare medical condition by holding a fundraiser at his school and talking to classmates.

Zac Freshwater, four, was born with a condition called Moebius Syndrome, which affects the nerves in his lower face and means that the youngster has a small chin and tongue.

Moebius Day  :Rothwell:  Moebius Syndrome Awareness Day Rothwell Victoria Infants School fundraising for  Moebius Syndrome Awareness Day by pupils. Reception pupil Zac Freshwater, 4,  has Moebius Syndrome. Mum Gemma Summerfield, Zac Freshwater, 4,  and Caroline Tighe (deputy head) 'Tuesday 28th January 2014

Moebius Day :Rothwell: Moebius Syndrome Awareness Day Rothwell Victoria Infants School fundraising for Moebius Syndrome Awareness Day by pupils. Reception pupil Zac Freshwater, 4, has Moebius Syndrome. Mum Gemma Summerfield, Zac Freshwater, 4, and Caroline Tighe (deputy head) 'Tuesday 28th January 2014

As a result, Zac struggles to drink liquids – although his mum Gemma Summerfield says Zac is just like any other four-year-old.

On Friday, Gemma visited Zac’s school, Rothwell Victoria Infants School, which had agreed to let pupils wear purple clothes for the day in a bid to help raise money for the Moebius Syndrome Foundation.

Friday was national Moebius Syndrome Awareness day.

Gemma said: “The school have been really good. We held a cake sale and sold some other items and between that and the wear purple day we managed to raise £444.

“However, the school also invited me to go in during their assembly and talk to the children about Moebius Syndrome.

“It was hard work speaking in front of so many people but hopefully they understand a little bit more now.

“I wanted the other children to be more aware about Zac’s condition as it is quite rare and they might not understand why he needs things like a feeding tube.”

Because of his condition Zac cannot drink liquids, so mum Gemma says she has to regularly give him a feeding tube so he can stay hydrated.

Zac started school in September and is very much enjoying it, says his mum.

She added: “The school has been really good and understanding.

“When he’s running round with his friends you would never know he has the syndrome.”

He lives in High Street and has one younger sister, Amelia, one, and two older step-siblings Madison, eight, and Reggie, five.

For more information about the condition visit the website www.moebiussyndrome.com.

Rare syndrome without a cure

Moebius Syndrome has no cure, although symptoms can be improved with therapy and surgery.

Physical and speech therapy can improve motor skills and co-ordination and can lead to better control of speaking and eating abilities.

Surgeons can also transfer muscles from the thigh to the mouth to give sufferers the ability to smile.