A cuddle for children Max and Eliza-Jade from Kayleigh-Faye after losing her locks. Pictures: Cathy Barber.

A mum-of-two had her head shaved to raise awareness of a rare genetic disorder.

Kayleigh-Faye McKerchar, 24, of West Winch, decided to make the bold statement to highlight  the condition suffered by her five-and-a-half-month-old daughter, Eliza-Jade Muller, who was born with Beckwith Wiedemann Syndrome (BWS).

The condition, known as overgrowth syndrome, affects just one in 17,000 people and the majority of the sufferers are in America.

Miss McKerchar said she was aware of two other youngsters in this area who have the syndrome, which has a number of symptoms.

Fundraising mum Kayleigh-Faye McKerchar before her head shave.
Fundraising mum Kayleigh-Faye McKerchar before her head shave.

Eliza-Jade has an enlarged tongue, one of her legs is thicker than the other, her ears are set lower and she has non-cancerous tumour  of the skin.

Miss McKerchar said the condition will mean her daughter was 600 times more likely to develop cancerous tumours and, until the age of eight, she will have ultra-sound checks every three months at the Queen Elizabeth Hospital, King’s Lynn, to monitor changes.

Doctors have been carrying out tests to find out why Eliza-Jade has the syndrome, which was noticed by hospital staff when she was just 12 hours old.

Miss McKerchar explained her son Max, 3, may also have to be tested if the genetic condition was found to have been passed down.

As a result of the syndrome, Eliza-Jade has problems feeding and her walking and speech development could also be affected. Miss McKerchar said her daughter also took longer than most babies to be able to smile but now she was always smiling.

The mum said she decided to have her long hair shaved to highlight the many children  who lose their locks as a result of cancer treatment as Eliza-Jade’s condition was also linked to cancer.

“I wanted to do something which was noticeable and make people aware. I hope I have educated people about it.

“I have even had doctors and nurses who have needed to look-up the condition and I’ve had at least 200 people say they had no idea about it,” said Miss McKerchar.

Despite the condition, Eliza-Jade has a normal life expectancy and Miss McKerchar said her daughter would probably be able to lead a normal adult life.

“She is a very happy baby, she is always smiling. We had to wait a long while for her to smile,” she said.

The fundraising day at West Winch village hall bagged £720 for  the BWS Support Network, which provides help for families.

The event was Miss McKerchar’s first fundraiser and she hopes to do something next year for the charity.