No name found for youngster's rare condition

A SWANSEA youngster is living with a condition so rare medics are struggling to name what's wrong with her.

Despite four-year-old Charlotte Renzi undergoing a series of tests since birth, her condition is yet to be diagnosed.

When Charlotte, of Port Tennant, was born, it seemed she was just like any other baby.

But checks showed she was profoundly deaf, partially sighted and unable to eat or stand on her own. It has also emerged she is suffering brain damage.

Her gran June Renzi, aged 51, of Jersey Terrace in Port Talbot, said: "At the moment, she's unique.

"Charlotte was born profoundly deaf, with a terrible problem with her eyes.

"She can't feed or swallow, she has to be peg fed through her stomach.

"They transferred her to Great Ormond Street, London, 14 months ago from Singleton eye department, and found out she had brain damage."

She added: "They cannot give a name for her condition, because there is no name."

The Port Tennant youngster, who goes to Ysgol Crug Glas, in Swansea, will need support throughout her life, and specialist equipment will have to be bought as she grows up.

June added: "She needs a special car seat and a special bed — her needs are greater than a normal child."

A fund-raising drive was started last year towards covering the cost of equipment for Charlotte's care, bringing in around £2,000, with the support of the local Mile End Inn.

The family have also helped bring in £4,000 for the charitable special education centre for pre-school children — Stepping Stones.

June said she was grateful to people living in the area for helping to raise money.

"The people of Port Tennant are absolutely wonderful. We raised £4,000 through them towards the charity Stepping Stones," she added.

Mary Halloran, who runs Floyd's Hairdressers, Port Tennant Road, Port Tennant, and is the manager of female impersonator Ceri Dupree, said she wanted to do all she could to help the family.

She is holding a fund-raiser this weekend.

She added: "The family are clients of mine who I have known for a number of years.

"Charlotte's condition still hasn't been diagnosed, and she is going back and forth to Great Ormond Street Hospital in London.

"After seeing her, we wanted to help. Ceri Dupree will be involved on Saturday."

The fund-raiser is being held tonight at the Dockers Club in St Thomas at 7pm.

Tickets can be bought from Floyd's Hairdressers, the Dockers Club or Premier Store on Port Tennant Road. Anyone who wants to donate raffle prizes can contact Mary Halloran on 01792 472345.