Teen born without hair won't leave home without wigs - now NHS has slashed funding

A 13-year-old who was born without hair has been told she will no longer receive vouchers for the specialist wigs she's worn since she was three.

Mum Ceri said Kizzi-Rae's hair "grows like fluff and then disappears", and two specialist wigs per year cost £1,250 each, for which she receives funding.

But Kizzi-Rae was referred back to her local hospital from Salford Royal after a review led to patients living outside the area being transitioned back to their area's healthcare providers.

Now a Wrexham Maelor hospital patient, she is only eligible for two £100 vouchers a year, leaving the family £2,300 short.

Betsi Cadwaladr University Health Board said it could not comment on individual cases.

"With the cost of living as it is, putting food on the table each week is hard enough," Ceri said.

"The wigs help Kizzi feel like she is the same as everybody else. They give her confidence and help her mental health. She won't leave the house without them."

Ceri from Hope, near Wrexham, said she "felt angry at the fact they can just pick her up and drop her like that".

"It's incredibly difficult for her especially at the age she is, with teenager hormones and everything. Appearance and things like hair are everything to teens," she said.

Kizzi-Rae was first referred to a specialist about her lack of hair at three years old.

"At first we just thought she was late growing hair, but when she was three I mentioned it to a doctor and they referred her onto Wrexham Maelor Hospital," Ceri said.

"It was quite scary because around five nurses and doctors come in to have a look at her, and that's when I began to think that something must be seriously wrong. But they just said they hadn't seen it before."

She was then referred to a dermatology specialist at Salford Royal.

"They were still baffled and took pictures of her head, and said we will just see how it goes as she was still so little," said Ceri.

Over the years, Kizzi-Rae has undertaken genetic testing and scalp inspections, but is yet to have an official diagnosis.

"We live in a cruel world, and people stare and say things," said Ceri.

"We would much rather people come over and ask rather than just stare. Everyone's different, and you just don't know what someone else is going through.

"As a mum, it's hard to watch a child be different and go through things that other kids don't have to go through. It can be heartbreaking sometimes."

She shared that the specialist wigs, which are usually blonde, help give Kizzi-Rae confidence.

"Kizzi is caring, fun and kind. She is football crazy and can be the biggest tomboy sometimes, but she also likes her nails and girly things as well. Every little girl wants their hair," said Ceri.

"The wigs help Kizzi feel like she is the same as everybody else. They give her confidence and help her mental health. She won't leave the house without them."

The family have been receiving vouchers over the past decade which have covered the cost of two wigs per year from a specialised wig salon in Manchester called Aderans Trendco.

"Because Kizzi's head is so small, you can't just buy any wig off the internet, we have tried. I always make sure that she has the new one ready to start the school year in September, and then another one around January," said Ceri.

Kizzi-Rae is due to start Year nine in September, but Ceri was worried if they do not find funds for the new wig that she will refuse to go to school.

"She won't go to school if she doesn't have it and if she doesn't go to school, I'm worried I will get fines and it'll just open up another can of worms," said Ceri.

She added that Kizzi-Rae's current wig was old, shedding and needed replacing immediately, which prompted her to set up a GoFundMe page - raising £1,068.

"Friends and family have been amazing. Kizzi's a keen footballer, so the football groups and parents have been sharing it too. It's been overwhelming. People are so kind," said Ceri.

The fundraiser also caught the attention of Tim Holt, owner of Holts Orangeries and Conservatories, who sponsors Kizzi-Rae's football team Aston Park Rangers Girls.

He sent the family £1,200 that has paid for a wig for Kizzi-Rae to have for the start of the school year, but Ceri is still concerned about the future.

"I just want the people who are in charge of health boards and the government to look at things like this that are a massive thing in a child's life," said Ceri.

"They need to be more aware of the struggles people have, and I want to get this issue raised in government.

"Eventually I want to start a charity to help other little girls like Kizzi that are in the same difficult position as us.

"For kids these days, it's hard enough growing up in this world we live in without the added pressure of this."

Northern Care Alliance NHS Foundation Trust, which operates the Salford Royal hospital, said a review of the service led to patients' ongoing wig provision being transferred to their local health providers, "helping to ensure care is delivered closer to home".

"We recognise that arrangements for wig provision may differ between hospitals, as each organisation operates its own pathways and funding arrangements. Patients will be guided towards the most appropriate local service to support their ongoing needs."

Teresa Owen, deputy chief executive and executive director of Allied Health Professions and Health Sciences at Betsi Cadwaladr University Health Board, which runs Wrexham Maelor Hospital, said cancer and dermatology patients get £200 in wig vouchers a year which is "only possible thanks to the donations the charity receives from the public".

"We understand the patient's family has also contacted our People's Enquiry and Resolution Service (PEARS). The team is reviewing their concerns raised and will be in touch with the family directly."