How we use Cookies

Families gather to highlight condition

A BOROUGH mum whose daughter suffers with a rare genetic condition has organised the UK’s first ever conference for other families affected by the disorder.

A BOROUGH mum whose daughter suffers with a rare genetic condition has organised the UK’s first ever conference for other families affected by the disorder.

Little Evie-Anne Peel, from Chelmsley Wood, was born with 1p36 deletion syndrome - there are only 31 people known to be living with the condition in the UK today.

Parents Michelle and Mark noticed something wrong shortly after she was born - she didn’t smile and wasn’t making eye contact.

So rare is the disorder, it took experts many months to make a formal diagnosis.

Now aged three, Evie suffers with epileptic seizures, low muscle tone and sight problems

mum Michelle has been organising a four-day event, centred in Shirley, with around 20 families travelling to the borough from all over the country.

“This is very much a first,” said the 37-year-old.

“They have a big event in America, but this is the first time that we’ve attempted anything like this over here.

“It’s taken a lot of work. I’ve been more nervous about this than my wedding day - but it will be incredible to get all these people together.”

The event begins at the Village Hotel next Thursday (August 2) and over the following days there will be a trip to Drayton Manor Park for the families and an information day at Merstone Special School, in Smith’s Wood.

“We’ve had such wonderful help from within the community,” added Michelle.

“Lions clubs from Shirley, Sheldon and Marston Green have all got behind us.

“It can be difficult because we’re not a registered charity and sometimes people don’t want to give to something they’ve never heard of, but we really do want to raise as much awareness as possible about this condition.”

To find out more visit www.evie-annes-adventures.com

 

Journalists

Cathrina Hulse
Multimedia Journalist
Annette Belcher
Multimedia Journalist
Full newsroom contact details
Tell us what's happening in your area.