Discovery.
Scott in 2007
Scott was diagnosed with Von Hippel-Lindau (VHL) in 2006 at the age of 17 whilst studying Uniformed Services at South Trafford College. He was at home alone and lost his balance, falling and hitting his head on the corner of a radiator knocking himself unconscious. When he came around he ran to Trafford General Hospital a couple of miles away and was examined for his injuries. Scott was scanned for more serious damage due to the head injury he had sustained, which uncovered the tumours growing down his spinal cord and in his brain. Until this incident Scott lived a normal life and like the majority of the population had never heard of VHL.
He was forced to withdraw from this course at college and give up his potential career. Instead taking a job at ASDA which was just about the only company willing to employ Scott with his condition, rather than stay at home and accept disability benefits.
He had numerous operations, too many to count. The first major operation took place shortly after his diagnosis and meant he spent his 18th birthday in hospital. They entered his spine in the hope of removing the tumours however upon examination discovered that the tumours were too difficult to separate from his spinal cord and any attempt to remove them could have caused his death on the operating table.
He was forced to withdraw from this course at college and give up his potential career. Instead taking a job at ASDA which was just about the only company willing to employ Scott with his condition, rather than stay at home and accept disability benefits.
He had numerous operations, too many to count. The first major operation took place shortly after his diagnosis and meant he spent his 18th birthday in hospital. They entered his spine in the hope of removing the tumours however upon examination discovered that the tumours were too difficult to separate from his spinal cord and any attempt to remove them could have caused his death on the operating table.
The Beginning.
In Portugal 2009
At this early stage Scott could live a relatively normal life, the only issues surrounded his balance and the use of his hands as the condition meant his balance was very poor and he didn't have much feeling in his
hands. Scott was a very talented footballer however he was unable to play and lost this ability due to his lack of balance, I went on holiday with him in 2009 and he was unable to kick a ball without nearly falling over at this point. Scott remained very interested in football and spent most of his time at home listening to Sky Sports News and any football matches that were being broadcasted.
These symptoms progressed and his eyesight also became an issue as tumours began to grow behind his eyes, which caused further issues for his balance and hands. With his eyesight diminishing the use of his hands became more difficult as he could no longer see, with ease, what his hands were doing.
These symptoms progressed and his eyesight also became an issue as tumours began to grow behind his eyes, which caused further issues for his balance and hands. With his eyesight diminishing the use of his hands became more difficult as he could no longer see, with ease, what his hands were doing.
development.
In January 2011, Scott woke up and his eyesight had gone completely, and he was registered blind. He was admitted to hospital with other issues, not solely his eyesight, spending approximately six weeks in hospital before returning home.
He was again admitted to hospital in March 2011 with breathing difficulties. Scott was holding his breath until his lips turned blue, however he had no control of his breathing. This continued for two days with the medical staff believing that this was a pain control mechanism, but he began to hold his breath for longer and longer until it was dangerous. Doctors finally decided to act and a scan revealed a build up of fluid on the brain, which required an emergency operation to remove the fluid and relieve the pressure with a make shift drain. Scott officially died for 3 minutes at this stage until doctors were able to revive him. Scott was moved to the Intensive Care Unit (ICU) at Salford Royal (Hope) Hospital and had a second operation, a ventriculoscopy, to divert the fluid away permanently and allow it to drain naturally as it should which involved entering up to 5cm into his brain. This operation was a success and saved Scott's life.
He was again admitted to hospital in March 2011 with breathing difficulties. Scott was holding his breath until his lips turned blue, however he had no control of his breathing. This continued for two days with the medical staff believing that this was a pain control mechanism, but he began to hold his breath for longer and longer until it was dangerous. Doctors finally decided to act and a scan revealed a build up of fluid on the brain, which required an emergency operation to remove the fluid and relieve the pressure with a make shift drain. Scott officially died for 3 minutes at this stage until doctors were able to revive him. Scott was moved to the Intensive Care Unit (ICU) at Salford Royal (Hope) Hospital and had a second operation, a ventriculoscopy, to divert the fluid away permanently and allow it to drain naturally as it should which involved entering up to 5cm into his brain. This operation was a success and saved Scott's life.
Moving Home.
Scott's new room - featured in the local newspaper.
Scott's balance had deteriorated to a point where he was no longer able to stand up, even when assisted, and he spent a total of six weeks in hospital and would only be allowed home when a specially adapted room was ready. This room was constructed on the ground floor of his house with a hospital-style bed and washroom, with a tremendous amount of support and help from the local community and people closest to Scott.
When Scott came home he settled into his new surroundings well, however had difficulty feeling safe on the ground floor whilst blind as he, understandably, felt vulnerable. As a result he often had trouble sleeping.
Scott's spirits remained high, considering his position and he got out as much as possible to the local football club and pubs.
Unfortunately whilst out for the day at St. Ann's Hospice in Heald Green a member of staff noted that Scott couldn't keep himself awake and referred him back to Hope Hospital. Scott spent a total of 6 days in hospital and had a CT scan, an MRI scan which both showed minimal change in his brain.
When Scott came home he settled into his new surroundings well, however had difficulty feeling safe on the ground floor whilst blind as he, understandably, felt vulnerable. As a result he often had trouble sleeping.
Scott's spirits remained high, considering his position and he got out as much as possible to the local football club and pubs.
Unfortunately whilst out for the day at St. Ann's Hospice in Heald Green a member of staff noted that Scott couldn't keep himself awake and referred him back to Hope Hospital. Scott spent a total of 6 days in hospital and had a CT scan, an MRI scan which both showed minimal change in his brain.
St. Ann's Hospice.
Scott went into St. Ann's Hospice in Little Hulton on Friday 15th July 2011. This visit to the hospice was to try and get to the root of the drowsiness issues amongst other things. The hospice and all their staff were very friendly and Scott was treated like a king, he argued that it's exactly how it should be. Much better than the hustle and bustle of a hospital ward.
Scott left St. Ann's to come home on Thursday 11th August 2011.
Scott left St. Ann's to come home on Thursday 11th August 2011.
Celebrity Juice.
On Wednesday 14th September 2011, Scott travelled down to London and attended the Riverside Studios to watch the recording of Celebrity Juice. This trip was arranged and funded by the Willow Foundation allowing Scott to meet Leigh Francis (Keith Lemon), Holly Willoughby and Amy Childs (TOWIE).
A huge thank you goes to the Willow Foundation - days like this provided many great memories, a much needed distraction and Scott had such a fun time. I hope many others get the opportunity to share a similar experience in times of need.
Below are the photographs from the trip in chronological order:
A huge thank you goes to the Willow Foundation - days like this provided many great memories, a much needed distraction and Scott had such a fun time. I hope many others get the opportunity to share a similar experience in times of need.
Below are the photographs from the trip in chronological order:
St. Ann's Hospice - Round 2.
Scott went back to St. Ann's Hospice on Tuesday 1st November 2011 with the aim of adjusting his medication, ensuring Scott is as alert and pain-free as possible. Once again Scott got the Royal suite and was treated accordingly.
He returned home on Friday 11th Novemeber 2011, meaning that he spent his 23rd birthday in the hospice.
He returned home on Friday 11th Novemeber 2011, meaning that he spent his 23rd birthday in the hospice.
Wheelchair Adapted Vehicle.
Shortly before Christmas 2011 Scott received his adapted car, meaning he could visit a wider variety of places (or as he calls them, pubs).
St. Ann's Hospice - Round 3.
Scott again returned to St. Ann's Hospice on Thursday 5th January 2012. He returned to his luxury room, number 15, I'm sure at this time they were close to renaming it the Scott Murphy Suite in his honour.
He remained at St. Ann's whilst work to extend his adapted room at home was carried out. They took this opportunity to tinker with his medication to find the right balance and improve his quality of life.
He returned home on Tuesday 21st February 2012 to "Welcome Home" banners and baloons in his newly extended room, complete with en-suite.
He remained at St. Ann's whilst work to extend his adapted room at home was carried out. They took this opportunity to tinker with his medication to find the right balance and improve his quality of life.
He returned home on Tuesday 21st February 2012 to "Welcome Home" banners and baloons in his newly extended room, complete with en-suite.
Scott's Passing.
Unfortunately Scott finally lost his long running battle with VHL on Friday 27th April 2012 at approximately 10:15pm, at the age of 23.
He passed peacefully and was surrounded by close family and friends, exactly what he wanted.
A True Inspiration.
Scott - wearing an interesting selection of headgear.
So there you go, Scott went through a lot and that is just a synopsis of his futile battle against VHL. The condition was terminal however this is where Scott demonstrated how unique he really was and such an inspiration to me personally. Despite his condition and the difficulties he faced on a day-to-day basis Scott was often in a jovial mood and constantly cracking jokes left, right and centre, as he possessed a wicked sense of humour.