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Liverpool Echo
Liverpool Echo
National
Olivia Tobin

Boy who will go blind in five years' time wants to make memories he can picture

An eight-year-old Everton supporter has been given the devastating news he will lose his sight when he's a teenager and won't be able to see his "heartbroken" mother.

Jack Phillips, from Fazakerley , was told he'd lose his vision just a week ago after having problems with his sight since he had his first eye test at school.

Before he goes blind, Jack's family are trying to make as many "special memories" as they can for him to recall when he's older.

Jack's mum Steph Wilkes, 32, said her brave son would love to go to Scotland to see the countryside and has shown nothing but courage since he was given the life-changing news.

The mother-of-three said: "It's breaking our hearts and that's why we need to make sure he lives the best life he can now, sees everything he wants to see and has this memories in his mind."

She and Jack's father, John Phillips, 36, said they are desperate to raise awareness about Bardet Biedl syndrome, the rare genetic condition which has led to Jack's vision problems.

Steph said Jack first started having problems with his sight five years ago when he had an eye test at school, but like every other parent she thought it was normal and he would only need to wear glasses.

But Jack had other health problems and gradually his sight was getting worse, and Steph and John did not know why.

Jack Phillips, 8 with mum Steph from Fazakerley. Photo by Colin Lane (Colin Lane/Liverpool Echo)

She said: "Losing his vision will be a progressive thing, but it's one of those things that will never get better.

"At first we thought if he's got to wear glasses for the rest of his life, he's got to wear glasses for the rest of his life, but it's going to be a total loss of vision.

"It's mind-blowing."

Steph said the family were told Jack has Bardet-Biedl syndrome after years of not knowing, which is an inherited genetic condition that affects one in 100,000 babies born.

She said she had "never heard of it" before.

Symptoms can include visual impairment, extra fingers or toes at birth, obesity, learning disabilities and type 2 diabetes.

Since finding out Jack's diagnosis, Steph said the family are "devastated" and the "hardest thing" was knowing Jack won't be able to see her or John when he's older.

She said: "It was absolutely heartberaking. We're all broken-hearted over it. When we found out, we were just like 'what do we do now?'

"It's a rare genetic disorder so it's not like there's a cure around the corner. We're all absolutely devastated.

"It's the not knowing [what age his sight will go]. He could get to 12 or 13 and not be able to see at all."

Steph said Jack, who already can't see in when it's dark, has been "brilliant" since finding out about his future.

Jack Phillips, 8 with mum Steph and dad John from Fazakerley. Photo by Colin Lane (Colin Lane/Liverpool Echo)

She said: "He just takes it in his stride. We say to him things like 'can you see that Jack?' and he'll say 'yeah I can'. He can see it in his own way.

"He doesn't moan and he doesn't complain. He's amazing, he's an amazing little boy."

Steph said Jack is keen wrestling fan, as well as supporting Everton, and likes Harry Potter.

Jack Phillips, 8 from Fazakerley who has been told he will go blind when he turns a teenager due to a rare medical condition. Pictured with family Lewis, 12, mum Steph, dad John, Holly,2 and Jennifer,15. Photo by Colin Lane (Colin Lane/Liverpool Echo)

The family said the memories they intend to make for the schoolboy will be focused on "what he wants to do", but said they would love to spend quality family time together.

Steph said: "You take things for granted and don't think of doing them, but even if we went to Wales for the weekend and climbed up a mountain, the view would be amazing.

"Just things like that. He's always wanted to go to Scotland, for some reason, and it's like [since the diagnosis] we'll do that now."

The family have set up a GoFundMe page to create as many memories as they can.

Jack's auntie, Claire wrote: "Jack's parents have been told that he is likely to have lost all his vision by his teenage years, which has completely devastated us all.

"Jack meanwhile is still the happy go lucky gentle boy that we all love. We now want to create as many special memories as we can before he can no longer see."

To visit Jack's GoFundMe page, visit here.

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