PARENTS of a tot whose life will be cut short by a devastating brain condition are determined to make whatever time he has the best they can.

Jasper Bentley, who has lissencephaly, is unlikely to live beyond his 20s. But his parents Joanne Lovell and Jack Bentley of Queensfield have pledged to do everything they can to help him defy the odds.

Their lives were turned upside down when Jasper, one, was diagnosed with the condition. It affects development of the brain due to a lack of folds.

The young boy has also global developmental delay, vision impairment, epilepsy and infantile spasms which could potentially damage his brain.

Jack, 27, said: “He could get an epileptic episode and that could make him terminal where he could pass away quite quickly. So, you can take every day as one step with him.”

“Obviously he won’t lead a full life, his life is to a point terminal, so he won’t go to 60 or 70 years of age, he won’t probably make it beyond 30, but we are hopeful he will get into his 20s, so he will have some sort of adulthood.

“We will provide support, because a lot of it is down to the parents, but to be the fair the NHS is supportive.”

Jack and Joanne are applying for a grant to extend their home so the little boy can have his own room and have wheelchair access to the bathroom.

Joanne was the first to notice that Jasper was having epileptic seizures when he was only 11 weeks old.

It was after their second visit at the Great Western Hospital’s emergency department that Jasper was given an MRI scan, revealing the condition.

Jack told the Adver: “We went up to A&E for the first time. We show them a video, but they weren’t too concerned initially and let us go.

“Following another couple of these episodes, Joe got quite upset so I agreed we would go back up to the hospital and we would push to see someone a bit more senior.”

Joanne said: “I was heartbroken, I felt completely numb, it’s the worst thing in the world, I completely felt empty.

“At some point I was lost for word, as soon as we learnt, I just went completely blank and I don’t even think I heard the rest of what the doctor was saying.”

At 17 months Jasper has the brain of a six months old.

Jack added: “The hard bit for me is that he is not able to do what he wants. He has not got options, or not many. So, it’s about trying to make the best path he could have and hoping that he is happy and doesn’t realise that he won’t be able to swim or climb a mountain.”

And in the last six months, Jasper has developed infantile spasms which resulted into the loss of some basic abilities.

Jack said: “Up to about six months ago he had a good head control but after his first infantile spasm he actually lost that.

“We are making sure that he is not getting them again. When he does we get him see by a consultant and we go forward with that.”

Joanne, 26, who used to work at Max Spielmann as a sales assistant, quit her job shortly after the diagnosis. “I was on maternity leave still because he was still 11 weeks old. But I decided it was best for us and for Jasper for me to not go back to work because he needed 24-hour care. He needs me as much as possible.

“It was hard to make this decision because the money side of this isn’t great anyway, care allowance money isn’t great, but he needed me and he is the main priority.”

“His care needs are only going to get worse and he is going to need me more as gets bigger.”

Joanne set up a Facebook page called Jasper’s Journey where she shares updates and raises awareness of this rare condition. “We wanted to get the word out, because I didn’t have a clue what Lissencephaly was until Jasper was diagnosed and I’m sure many other people have no clue either. It’s mainly to raise awareness of this condition, and what it is.

“We are also trying to get as much money as we can try to give him the best things he would need, because special needs things aren’t cheap unfortunately.”

The charity Just4Children created a JustGiving page to support the family financially.

Its chief administrator Jeremy Marris said: “We want to help Jasper reach his full potential and have a normal life. One day, hopefully, he will be able to walk with his brother Jenson.”

But the family hopes Jasper will grow up and live life to the fullest. Jack, who is a project engineer for Network Rail in Swindon said: “We are hopeful that he will get to a good age with his condition, he might be that he goes beyond that. At the moment we are not really sure.

“He is a very poorly little boy, but he is perfect to me. The fact I can make him smile is what is important. I don’t want to miss all the positive. All the little steps that he does is a positive and you are trying to build on those.

“I don’t try to plan too far ahead. I look probably no further than the next four or five years because you don’t what’s going to happen.”

He added: “ I would like to upgrade our bathroom and make it easy for wheelchair access. We are looking at upgrading the garage or the attic as well and create a room for him, so he will have his bedroom, and another room with his soft toys.

“We need to make sure he is comfortable, so he is not going to physically hurt himself.”