Newbury girl living with Sturge Weber Syndrome stars in Comic Relief show with Dingley’s Promise

A three-year-old Newbury girl – living with a rare neurological condition – was one of the stars of this year’s Comic Relief show.

Nyla is living with Sturge Weber Syndrome (SWS), a vascular condition, often categorised by a birthmark – called a port-wine birthmark – on the face.

Her story was in last week’s Comic Relief show as the first appeal feature video, narrated by Doctor Who star Jodie Whittaker.

Before Nyla was born, her mother, Natalie Woodman had a normal pregnancy with no signs or indications of SWS.

When Nyla was born, on October 25, 2020, her parents noticed what they thought was a bruise on her face.

But two months later – on Christmas Eve – Nyla was diagnosed with SWS.

She suffered seizures on a daily basis and underwent brain surgery at only eight-months-old after being fast-tracked to Great Ormond Street Hospital.

But since then Nyla’s family said that children’s charity Dingley’s Promise has helped her thrive and they are keen to raise awareness of the nursery, which receives funding from Comic Relief, and of SWS.

“We have been in really dark places with Nyla with her health so it was a surreal moment,” Mrs Woodman told Newburytoday after the television appearance.

“Me and my husband are really proud of our daughter.

“Not only is she helping people but she is showing families that there is hope and it is ok to live with a disability.”

Mrs Woodman said the interview with Comic Relief bought back a “whirlwind of emotions” for her and her husband as the pair recalled their journey with their baby’s health.

“We had bottled everything up because you put on a brave parent face,” she said.

“Me and my husband have been through hell and back and doing the interview did bring back some trauma as we had to relive those dark times again.

“You don’t realise until you’re talking about it that wow, we have gone on a journey.

“It was a massive weight off our shoulders.”

Mrs Woodman said Dingley’s Promise – which supports children with special educational needs – has been incredible in its support of Nyla.

She said those at the charity pour their heart and soul into supporting all the children they care for.

Nyla has peers that she plays with when she visits the SEND charity and she has since formed a bond with her keyworker, despite usually finding it hard to connect with new people.

Mrs Woodman added: “If you were to tell us that Nyla was doing the stuff that she is doing now a year or two years ago we would not believe it.

“Nyla goes into school smiling and she comes out with a bigger smile and that is what we have always hoped for.

“They are a huge credit to Nyla’s progress and we are forever in debt to them.”

The family run a Facebook page where they chart their daughter’s journey in a bid to raise awareness of SWS.

Updates can be found at https://www.facebook.com/Nylasjourney

“We knew we had to tell families as we knew how hard it is,” Mrs Woodman added.

“You feel isolated from the world because you think you’re the only people going through this.

“We want to give families hope that everything is going to be okay and to keep focused on that flickering light at the end of the tunnel.”