A FAMILY are raising awareness — and funds — of a very rare condition.

Sixteen-year-old Tom Crook, is like anyone else his age, an active and happy school boy, but from a young age he and his family have had to cope with unwanted looks and sometimes even unwanted questions.

While he is just like most teenagers, a rare arm condition has often raised uninvited attention.

But now his mum Jane, aged 46, hopes to turn the attention into something positive and raise awareness and funds to help children born with an upper limb deficiency, and their families.

She has spoken about her own experiences raising Tom, from Harwood, who was born with ulna club hand.

She said: “It was a bit of a shock. When he was born I had pre-eclampsia, he was born six weeks early and I remember being told he had two digits, I was quite scared to have a look.

“You’ve got lots of questions in your head, wondering what he will be able to do.

“It was a amazing really how well he coped growing up. I was worried about things like how he was going to crawl but he did. He learnt to lift himself up, played with toys, there was never anything difficult for him. He just carried on.”

Ulna club hand is a rare birth defect which left Tom with a shorter left arm without an elbow and wrist joint and only two fingers on his left hand.

The condition — which can be present in as few as 100,000 babies — has not slowed him down or stopped the Canon Slade pupil from doing the things any other boisterous young boy would enjoy.

However, he faces challenges in more mundane tasks such as cooking food.

Jane said: “He has always wanted to climb things, jump off walls, jump off things.

“He plays tennis, he started quite young and he was taught how to serve with his arm.

“It is things like reading a book he finds more difficult. You have got to have an attachment for a book, so there are bits we need to work around.

“When he was about to start school, I remember him asking that if he was a big boy now when would his hand grow. At that point it hit me that things would be different at school.”

The biggest challenge by far though, has been dealing with looks from strangers, something Jane faced since Tom was a baby.

But she credits increased attention through anything from the Paralympics to Horwich National Para-Swimming Championship Luke Batty — who also has ulna club hand — to people becoming more understanding of various conditions.

She added: “I notice now we get less people looking. We used to go somewhere and I would see people have a look then do a double take. That was very upsetting to me.

“I once had someone ask me if I had taken anything during the pregnancy to cause it, this was someone I didn’t even know! They just came up to me.

“I did try and find out a reason, but there isn’t one.

“Getting stares, we had a lot of that growing up. It is annoying for him when people just keeping asking, that’s when we have had issues.

“He gets on with it and doesn’t want to bring attention to himself or standout.”

A big source of help and comfort for Tom and his family, which includes dad Gary, aged 47, and 12-year-old brother Joseph, has been national charity Reach.

It provides resources, support and practical information, as well as connecting families and sharing stories of those living with can upper limb deficiency.

Jane now fundraises for the charity and helps connect members living in the North West.

She said: “It was a chance for Tom to meet people and see people with a similar condition. It helps his confidence. There are members throughout the country including people who are older who have gone on to do different things.

“He has met an accident and emergency doctor, nurses, etc. At first you don’t think you would be able to go into those occupations but for children to see that you can helps a lot.

“You really need help after you’ve had your baby. There are so many questions.

“In the North West there’s quite a few members, when I organise meet ups we sometime have up to 80 people attending. There are about 200 members, which includes parents and their children.”

Jane is now helping to host a charity ball for Reach on September 23 at the Last Drop Village Hotel & Spa. To support or find out more contact Jane at janecrook7@gmail.com, or visit www. reach.org.uk.