HARRY Rolph-Wills is in many ways a typical little boy who adores trains and buses and anything where he is able to make a mess.

He loves going to the beach and pretending to push his mum and dad into the sea and going to school every day with his many friends.

But he is also living with a rare genetic disorder which has left him unable to walk or talk and will gradually see his condition deteriorate over time.

His mum and dad Graham, 37, and Laura, 34, had no idea they both carried a faulty gene for Batten Disease when they married and began plans to start a family.

The couple, who are speaking out about their own experience as part of the national Jeans for Genes Day which raises funds for the UK Children’s Charity Genetic Disorder UK, already had a son, Joshua, who was developing normally.

In fact, there were no causes for concern in the first few years of little Harry’s life.

Laura, from Dovercourt, says: “He was a healthy baby but when he was two he stopped progressing, he sort of stagnated really and he was starting to fall over a lot.

“I wasn’t really concerned at first and we just thought he would catch up later but then he started falling over and the occupational therapist we took him to see suggested it might be his eyesight causing him to fall.

“But even after we went to the opticians they did not pick up that anything was wrong beyond him needing glasses.

“It was only when his eyesight continued to deteriorate that we realised there was something more, and he was not developing any more with his speech.

“He was five when we got the diagnosis it was Batten’s Disease,” she adds.

Batten’s Disease means genes don’t make the proteins needed for cells to work properly and children with it live to an average of 12.

Laura and Graham hope Harry, who is now eight, may do better as he has a variant of the disease.

Laura continues: “He has good weeks and bad weeks but in the last six months he has changed considerably.

“I would say before that he was still quite healthy but he is completely different physically now.

“He cannot walk or talk, although he never was a great talker we could always understand him as he had his own kind of language, and he has to be fed through a tube.

“Mentally he has been affected because dementia is part of what happens.

“We did not notice it at first but when he started nursery and they had their own coat peg which is always in the same place, he began to forget where his was and he would have to look at every peg.

“But he was always happy, we called him Happy Harry because he was always smiling,”

Now in a wheelchair, Harry attends a special needs school near his home full time and once a month spends time at a hospice so that Laura and Graham can have a night with Joshua, 11.

“Before he was diagnosed, when we just thought he had his little quirks but would be fine, we would watch things like Children in Need and look at the children on there and tell each other how lucky we were.

“We would think ‘thank god that’s not us, he might walk a bit funny but he is okay otherwise’, and now we are one of the those families and it has changed our outlook completely,” admits Laura.

Now the family live every day as it comes - doing something fun and uplifting at least once a day.

“Harry loves going to the beach, although it is sometimes hard to get his wheelchair on there, and we are lucky to live near to it.

“He likes to pretend to push us in and he finds that very funny - he has a wicked sense of humour.

“We just try to have a good time together as a family every day,” says Laura, who has given up her job to look after Harry.

She says the couple had no idea they were carriers of the gene but following tests on them and their wider family it has been found Joshua is a carrier of the faulty gene.

As he has got older Harry’s relationship with his big brother has changed, thought it remains extremely close and loving.

“Harry always looked up to Joshua and they were always playing together, although obviously they did fall out as well.

“They were both so happy when Harry started school with him and Harry was always trying to sneak into cubs with him so he could stay too.

“And now Harry needs more looking after Joshua’s role has changed slightly to looking after him a bit more and making sure he is OK.”

As well as raising funds so their home could be adapted for Harry’s needs two years ago, the family have also set up Sponsor a Sibling which seeks to offer support to those children living with brothers or sisters with terminal illnesses or conditions.

“There are lots of things like Make a Wish for the children who are poorly themselves, which are wonderful, but nothing for their siblings who are also having to deal with a lot.

“We ask for siblings to be nominated and they then put together an Amazon wishlist of gifts that the funds raised are used to pay for.

“We have reached the £6,000 mark now which means we can get registered as a charity and the aim is to raise more money to buy a caravan so that siblings and their mums and dads can go there for a free holiday or a night’s respite.”

n Jeans for Genes Day is on Friday, September 22, and everyone is invited to wear their jeans to work or school in return for a donation. Sign up for your free fundraising pack at jeansfor genesday.org