American dream for Harrogate girl battling incredibly rare genetic disorder

Olivia Wightman (s)
Olivia Wightman (s)

A Harrogate girl battling an incredibly rare genetic disorder is hoping to meet others afflicted by the syndrome for the first time at a conference in America next month.

Olivia Wightman, 7, was diagnosed with Blooms syndrome at just 18-months-old after struggling with constant illnesses and frequent hospital visits and tests.

The syndrome, which means that Olivia struggles with height and weight issues as well as photosensitivity, is so rare that only 170 other people are currently diagnosed with it.

As a result, Olivia has never met another Blooms sufferer before but finally has the opportunity to do so at a conference in America.

The conference will see medical professionals presenting their latest research on the syndrome as well as other victims sharing their stories of living with Blooms.

Olivia’s mum Leza has been tirelessly fund-raising in order to send the family over to Seattle and is now just a few hundred pounds short of her £5000 target.

Leza said she’s hoping the conference will show her daughter she’s not the only one suffering with the condition and wants it to be a ‘massive boost’ for her confidence.

She said: “Olivia feels so lonely having this condition because she’s got to that age where she’s realised she’s different and that she’s not the same as her friends. It’s heartbreaking to see.

“People comment on how small she is and she knows there are things wrong with her. So for her to see that she’s not the only person who struggled with their height and the illness is important.

“It will be massively beneficial for us to find out how other people deal with it because when she does get poorly it is scary, and it’s starting to get scary for her as well.”

As well as battling height and illness problems, Olivia is also at a greatly increased risk of cancer but Leza said that’s not stopped her family living life to the full.

She said: “I would never change Olivia for the world, we take things day by day and we try to keep everything as normal as possible.

“She’s so independent and confident amongst her friends. She’s got such a positive attitude and determined to do as much as she can.”

The family are now holding a charity race night at Harrogate Railway on April 29 and anyone can donate to Olivia’s cause at www.gofundme.com/oliviabloomie