Plea for NHS to give grandson wonderdrug after HEARTBREAKING cystic fibrosis diagnosis

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Cystic fibrosis: pensioners John and Frances Binns plead for grandson to be given wonderdrug (Image: EXPRESS)

And pensioners John, 70, and Frances Binns, 68, told us the farcical NHS stalemate over a deal for the treatment “horrendous” and “needs resolving now.” The retired couple are legal guardians for eight year-old CR-sufferer Tristan after his dad Andrew, their eldest son, hanged himself from depression. But they are sadly no strangers to the debilitating genetic disease after their younger son Adam had CF and died from the condition aged 25 in 1999.

Ex-police Divisional Commander John, of Holmfirth, West Yorks, told us: “CF is just one disease but it’s had a massive impact on our family.

“We have had enough grief in our family we now want some joy and getting Orkambi for Tristan so he can have a full life would be that.

“We have already told Tristan all about his Uncle Adam and how he had CF, got very poorly and sadly died.

“Vertex and NHS England have not been talking for months now and that is obscene.

“This situation needs resolving immediately and positively.

“There are other CF sufferers out there, ones who are dying and who cannot wait any longer.”

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John and Frances’s grandson, Tristan, also has cystic fibrosis (Image: EXPRESS)

John and Frances had healthy son Andrew in March 1973 before their premature triplets Francine, Claudine and Adam came along in February 1974.

They explained how it was “scary” suddenly having four children all aged under 12 months, complicated by baby Adam having CF.

The couple tried to keep Adam as fit and healthy as possible and he became a computer technician, while still living at home.

He always struggled with his weight and to get enough food and calories into his body, even getting fed at night through a tube in his nose.

John recalled: “We had an oxygen machine at home to help him breathe and at night I used to lie awake hearing my boy coughing.

“It was devastating. What he had to put up with was beyond belief.”

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The couple have said ‘the stalemate with Vertex needs resolving now and resolving positively’ (Image: Vertex)

When John finished his 30 year West Yorkshire Police service in August 1998 he hoped it would coincide with Adam getting a much-needed lung transplant.

That very month Adam was accepted onto the transplant list and John and ex-nurse Frances joined him at Newcastle’s Freeman Hospital for an assessment.

Seriously-ill Adam was given a pager by the hospital in case he had to suddenly rush back for his transplant when a set of lungs became available.

But after no donor was found Adam was hit by a series of serious lung infections and tragically died from the condition aged 25 in March 1999.

John said: “We were devastated. He had not had a full life. It was truly heart-breaking for all the family.”

The couple’s other son Andrew, a Para Combat Engineer with 33 EOD (‘Bomb Disposal’), was once a married father-of-two but sadly he and his wife split up.

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John and Frances faced yet another tragedy in 2016 when Andrew was found hanged (Image: EXPRESS)

In May 2010 Andrew and his then girlfriend had Tristan but to their complete shock their baby boy – like Adam – was also born with CF.

A year later Andrew became ‘Sole Carer’ for Tristan but found it hard-work, with John and Frances often helping out raise the poorly toddler.

John explained: “Andrew struggled with depression. Some linked to CF, some other problems. Being the sole carer for Tristan was not easy on him.

“It is incredibly draining and mentally taxing looking after a CF child as there are so many routines, tablets, physio and care that must be taken every single day.”

But in April 2016 John and Frances faced yet another tragedy when police informed them they had found Andrew hanged at Cleckheaton, near Bradford.

An inquest later gave an open verdict, as they could not be sure he intended to take his own life, but with the cause of death hanging.

Days later John and Frances stepped in and found themselves yet again raising a child with CF, and now have a full-time ‘Special Guardianship Order’.

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The NHS and Vertex have been discussing for months to resolve the issue (Image: Vertex)

John said: “Tristan asks about his father and knows how he died. We’ve all had bereavement counselling.

“We have told him also about Uncle Adam and that he had the same condition he has got and hopes in time that will help him.

“He is a bright little guy who likes Huddersfield Town FC and swimming and has lots of friends at school.

“We are just hoping to do the best for him, for the sake of his dad and of course his Uncle Adam.

“Tristan sometimes says to us ‘Grandpa I wish I didn’t have CF’ but I can only say ‘I know but we have to get on with it’.”

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John and Frances have already suffered the tragedy of losing two sons (Image: EXPRESS)

Now the couple are desperate to use their knowledge of helping care for Adam to help raise the nephew he never met, Tristan.

And they are also determined that as Adam had already passed away before Orkambi was invented, Tristan must be able to receive Vertex’s ‘wonder drug’.

John told us: “Orkambi was not invented when Adam was alive so was not able to help him, but it could help Tristan.

“I now see it as so sad that we could help Tristan with his drug but it isn’t available on the NHS.

“If he gets Orkambi Tristan will still have CF but the damage to his lungs will be put on hold and it could add up top 23 years extra to his life.

“That is why we must keep Tristan as healthy as possible so we are ready if Orkambi becomes available – as it will keep him at the health level he is when he starts taking the drug.

“The stalemate with Vertex needs resolving now and resolving positively. To deny it to a child like Tristan is truly horrendous.”

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source: express.co.uk