Feniscowles: Mum raising money for baby's tongue reduction surgery

Hayley Parker is hoping to raise £15,000 for her one-year-old’s tongue reduction operation.

Her daughter, Nori Hannon, suffers with a rare condition called Beckwith–Wiedemann syndrome.

The overgrowth syndrome only affects one in 15,000 people and can cause asymmetry of growth, enlarged kidneys, large tongues and other symptoms.

Nori Hannon with mum Hayley Parker (Image: Hayley Parker)

Hayley says she and Nori’s dad, Alex Hannon, were shocked when they heard the diagnosis as they had never heard of the syndrome before.

She said: “Nobody has ever heard of the syndrome and this is the problem.

“I didn’t know anything was wrong initially. A few weeks before I was meant to give birth I went for a scan and they could see that her tongue was resting out of her mouth, which you could see on the scan really clearly.

“Doctors also told me her kidneys were enlarged.

Nori Hannon with dad Alex Hannon (Image: Hayley Parker)

“It was a massive shock as we hadn’t even heard of the condition until she arrived.”

When she was born, Nori was just five pounds one ounce. Doctors put her straight onto a ventilation, and she was tube fed for months.

Hayley, who now lives in Preston, said: “Nori has done really well so far and has smashed every challenge that has been thrown at her.”

While the family have to deal with all of the other symptoms of the disease, including Nori’s increased cancer risk, Hayley hopes the tongue reduction surgery will improve her quality of life.

She said: “It will improve her life in so many ways. After this she can get on with her life and just be a normal baby.

“She’s dying to talk and eat food and at the minute she can only have pureed things. She’s dribbling and drooling and is constantly wet.

“Her tongue blocks her airways which is constantly waking her up.

“She looks very different and gets a lot of stares. Some people have made not very nice comments made about her.”

While the treatment is on the NHS for free, the family have not yet been given a date as it isn’t classed as an essential surgery.

Hayley said: “It is a treatment that’s on the NHS and she is waiting for a date.

"But because it’s not life-threatening, as she can breathe and drink, they class it as plastic surgery and there isn’t an urgency for the treatment.

Nori Hannon in hospital (Image: Hayley Parker)

“I ring every week asking if a date has come up but there just don’t seem to be any available.

“If we get this done privately we could have a date as early as next month.

“This condition impacts her every day. Her teeth are coming through, it will impact her speech, it can cause severe underbites and could lead to jaw and teeth surgery down the line.

“I just want it done as soon as possible.”

Nori Hannon (Image: Hayley Parker)

More than £9,000 has been raised for the surgery so far and Hayley said she is “overwhelmed” with the level of support.

She said: “I am so overwhelmed at the level of support we have received, its brought me to tears. Strangers and people I haven’t spoken to in a long time are giving so generously.

“It’s so lovely how much people want to help.”

You can make a donation by visiting the family's GoFundMe page: https://gofund.me/56827ece