West Winch mum’s fundraiser for rare disease

Fundraiser IAO Beckwith Wiedemann Syndrome at West Winch ANL-160409-160415009
Fundraiser IAO Beckwith Wiedemann Syndrome at West Winch ANL-160409-160415009

A mum whose daughter will have to undergo regular ultra-sound scans for the first eight years of her life has held a fundraising day to help raise awareness of her baby daughter’s rare condition.

Kayleigh-Faye McKercher, from West Winch, held the charity event for her five-month-old daughter Eliza-Jade, who has been diagnosed with Beckwith-Wiedemann Syndrome.

Beckwith–Wiedemann syndrome is an overgrowth disorder usually present at birth, characterized by an increased risk of childhood cancer and certain congenital features.

Miss McKercher, 24, wanted to raise awareness of the genetic disease by having her hair shaved off at the fundraising day in West Winch Village Hall.

The well-attended fundraiser included a donated pass-the-parcel, a face painter, Paw Patrol, Elsa from Frozen, sweet stalls and a raffle.

Miss McKercher said: “I wanted to make everyone aware of this syndrome because it carries such great risks which need to be noticed.

“Every woman’s hair is their pride and joy but I wanted to sacrifice mine for my beautiful daughter and all the other amazing BWS babies and children.

“We had between 200 and 300 people come along which I was absolutely thrilled about.

“It allowed me to help educate people about Eliza-Jade’s illness and I wanted to raise money for the BWS charity because they are so small and it is such a rare condition.”

Although Eliza-Jade has a normal life expectancy, her condition effects approximately 1 in 17,000 children and she is 600 times more likely to develop cancer in the early years of her life.

She has macroglossia, an enlarged tongue, hemihyperthrophey, which has left her with one leg thicker and slightly longer than the other, and hemangioma which is a non-cancerous tumour of the skin.

Miss McKercher said: “When she was 12 hours old I had a doctor come to me and tell me that things were wrong with my perfect little girl.

“All I heard was the word genetics testing and I broke down. I was told she had a larger tongue, low set ears and a larger leg.

“When they first told me all of this, I was in complete denial.

“It wasn’t until she started to have seizures and I was holding her in my arms that I began to realise that something was seriously wrong.

“At this point, I took her back to the hospital and just wanted some answers.

“She had numerous blood tests, MRI scans, ECG’s and a lumber puncture before we were told she had the symptoms of Beckwith Wiedemann Syndrome.”

Because of her condition, Eliza-Jade will continue to have regular visits to Lynn’s Queen Elizabeth Hospital.

“She has already had one clear ultra-sound scan and her next one is due in November,” said Miss McKercher, who has never lost hope throughout Eliza-Jade’s early days.

“I did suffer with quite a bit of bleeding through my pregnancy so there were times when I did think that I might actually lose her,” she admitted.

“It could have been a lot worse as she may not have made it, which is why I’ve coped so well and tried to remain positive.”

Anyone who would like to donate can do so by visiting: Www.gofundme.com/