Ben Boyle

Hi, my name is Lynn and I’m trying to raise funds to help my friends Gillian and Alan so they can give their son, Ben, the send-off he so deserves.

Those of you who know Ben, will know what a character he was and he never stopped talking! The photo shows what the medical staff did in the hospital to 'shut him up' all in good fun!

Sadly, Ben lost his life unexpectedly on Sunday 5th November at Manchester Royal Infirmary after a short stay for what was initially a urine infection. After a few days in the hospital, Gillian and Alan were informed this had now become sepsis in his urine and also Ben had contracted a virus in his blood which spread to his heart causing endocarditis which affected his heart valves on both sides. If this wasn’t enough, Ben's body was retaining over 8 litres of fluid which needed draining.

Ben had a very successful kidney transplant, and, prior to this admission, the kidney had lasted almost 7 years but this recent infection/virus were causing his kidneys to fail so an emergency line was put into his groin to allow this fluid off him on dialysis. Sadley, this was not working and Ben’s platelets had dropped alarmingly to just 17 on Friday the 3rd so an emergency transfusion of platelets were added, on the following day Ben had to have three units of blood transfused as the haemoglobin had dropped to 20. Another two units were to be added on Sunday 5th.

Sadly on the morning of the 5th Ben appeared to have heart failure and although brought back to life was with his parents for just a short period. Gillian had slept by his bedside for 13 nights on a camp bed. As you can imagine this loss has devastated them both.

Ben was 37 although he was the size of a 13/14-year-old. He had a very rare syndrome, "Bardet Biedl (BBS) which left Ben registered blind and with moderate learning difficulties. Ben had pain in every weight bearing joint in his body but at the same time having an extremely high pain threshold. The final part of this syndrome is renal failure.

Ben almost died aged just 4 months with a bowel blockage and then received his first kidney transplant aged just 9 which lasted a few weeks. He received a 2nd transplant aged 12 which clotted and rejected in 24 hours. Ben's life was spent on hemo dialysis and when that started to fail both Gillian and Alan were trained in CAPD Dialysis which they performed every evening for almost 9 years. It is recommended nobody should stay on this type of dialysis for no more than four years, but Ben had no option. The result was he contracted EPS which calcifies his stomach and starves you to death.

Ben went on to get groundbreaking surgery and, against all odds came through this. One result was they were told he probably would never receive a transplant and would have a very limited life expectancy on dialysis. Only a few years earlier Gillian had lost her eldest son with the same condition.

Following having the transplant some 7 years ago, Ben enjoyed trips to Gibraltar and Spain to visit his younger brother plus holidays in Kefalonia and Turkey where he made many friends. Sadly in this dialysis pain free period Covid hit us and this confined both Ben and his mother to two years of almost total shielding, Due to Ben not being active through COVID, Ben lost the use of his legs and couldn't walk far so was restricted to a wheelchair, although he had just started to use a walker to build up leg muscles.

Obviously this sudden and unexpected passing of Ben, it has left Gillian and Alan with a huge void in their lives as they had poured everything into giving Ben the best life possible including watching Burnley & Everton, Trips to see St Helens Rugby home & away plus attending events such as WWE wrestling and theatres.

The implications have just hit Gillian and Alan and the cost of a funeral is just part of this. They did try and take out insurance/ funeral cover for Ben, but because he had been given a terminal life expectancy this proved impossible.

Ben really enjoyed life to the full . He loved to watch WWE wrestling (especially the divas). His learning difficulties were complex as he used to enjoy cartoons especially Scooby Doo and his favourite Baloo the bear who went everywhere with him even on holiday including when he was still on dialysis to Disney world and Ibiza as he loved his dance music.

Then the other extreme was he never missed question time ..... In his words" I love them arguing even though they are d**ks" He had an incredible mind if he was interested in something he would know countless facts on football as to grounds names and what they used to be known as, clubs nicknames and even if a team signed a new player, he could recite who they had once played for. Ben loved holidays and meeting people , he had to have a shirt from any country we visited, not happy with a fridge magnet so he has Egypt, Portugal, Spain, Gibraltar, Tunisia, Italy, Greece, Turkey and clubs including Burnley, Everton, Stalybridge Celtic but his most special would have been Besiktas as his friends bought it for him and it had their player who just signed for Everton on the back Cenk Tosun. In Rugby there was only one shirt he wanted and had new every season ...... world champions and super league winners 4 times in a row St. Helens. Ben loved visiting old houses and castles and came up with a word about 15 years ago that summed this up "Hauntedness" everybody told him there was no such word until around 3 years ago it came up on countdown ..... and it was a word, boy did he gloat about that!!

One thing I can say is if you were ever lucky enough to cross paths with Ben, he would have made an impression, no more so than when his parents went to make his funeral arrangements. One of the staff there remembered when they were planning for their son Andrews funeral, at that time Ben stayed in the office and came away with not only football scarfs and books and enjoyed a ride in the funeral car to get a happy meal but gave this tall member of staff a nickname which 11 years on he remembered ................... The Grim Reaper! That was Ben ............... he would have made a fortune as a comedian. He was also very philosophical and used to say ‘it is what it is, if you die you die’. He is very very sadly missed.

Finally, and in the words of his favourite character, " Forget about your worries and your strife" Ben never once complained about how he was and endured around 50 procedures in his lifetime, he just wanted to be like everyone else and enjoy life.

Thank you for taking the time to read this. We really do appreciate any donation you can make and, it will make a huge difference. Let’s give Ben the fitting send-off he so deserves.