Luton girl helps national charity raise awareness of children's genetic disorders

Anayah Saleem, from Leagrave, is helping the children's charity with their annual fundraising day, Jeans for Genes day.

This year it runs from Monday, September 16, until Friday, September 20, and everyone is invited to wear their jeans to work or school in return for a donation.

Genetic Disorders UK aims to change the world for children with genetic disorders, the money raised through Jeans for Genes Day will go to the vital care and support they need.

When Anayah was a baby, tests revealed that she had Bardet-Biedl Syndrome (BBS), a rare condition thought to affect around one in 100,000 in the UK. Some of the main symptoms for her are vision loss, a big appetite, weight gain, and challenging behaviour.

Her parents, Tanja and Saleem, worry about the future but have lots of support from other families affected by BBS, and from their own families.

Her mum Tanja, 33, said: "She had one finger extra on each hand and one toe extra on each foot. Straight away she had difficultly breathing, too, so she was rushed to the Neonatal Intensive Care Unit for tests.

"But they told us there were so many potential syndromes it could be, they would have to do a lot of tests."

The tests took about four months, once the diagnosis was confirmed, Tanja and Saleem contacted Bardet-Biedl Syndrome UK.

They have attended some of the BBS UK's key events, one of them was a family conference.

Tanja said: "For me it was crucial to speak to other people who knew about BBS, so I joined the Facebook group and it was fantastic – people were so helpful and I could ask all the questions I needed to ask.

"I have to admit the first time we went [to the conference], I found it tough to see people with canes, thinking that could be the future for Anayah.

"But overall it was a fantastic experience. It was great for our other children, Alisha and Aliyaan, too.

"The family days have lots of activities for all the kids and there’s lots about the latest research. We also see the professionals at Great Ormond Street every year."

Anayah is now in full-time nursery and doing well. Tanja said: "The staff are wonderful and being there full-time has really helped her – she has regular meals there so that’s stabilised her weight.

"At the moment, she gets annoyed with everything - even small things like my son sitting in a position she doesn’t like.

"She gets frustrated and cries, and can even start hitting herself and hitting and biting others.

"That’s really distressing. I do tell her off when she does something wrong – it feels important so she has some boundaries, although I don’t think she means to hurt people."

Tanja and Saleem have concerns about the future.

"The doctors and families tell us it won’t get better - it will only get worse," says Tanja.

"I get scared about Anayah being older and having tantrums. It’s an unpredictable condition, though, and children with it are all very different, so we just don’t know how Anayah will be be.

"Anayah loves her garden so summer is a good time – she plays in the garden all day long when it’s warm enough.

"She loves nursery rhymes, music and playing with her iPad. The others always try to play with her, especially in the garden – although it can be difficult sometimes as she just wants everything to herself."

Tanja feels having Anayah as a sister has helped her other two children, she said: "My other children are much more empathic and understanding because of their sister.

"My son stands up for other disabled children, which is wonderful to see. We all see people a different way now and understand what they’re going through.

"Being Anayah’s mum has opened my eyes."

Jeans for Genes Day takes place this week, host your fundraiser any date between 16th-20th September.

To sign up for your free fundraising pack, visit jeansforgenesday.org.