Shon's Story

After being born with a rare condition, 11-year-old Shon has spent over 600 nights in hospital, and had over 10 surgeries. We spoke to his Mum, Ash, about his journey and how your donations have helped their family.

'Shon was born in October 2011 at Raigmore Hospital in Inverness.'

'When Shon was a newborn, I noticed that he was very poor at feeding, slept for long hours and had a very faint cry.'

'Healthcare staff soon became concerned when Shon failed to show a sense of appetite and started to lose weight rapidly.'

'He was kept on an incubator for eight days and a urine sample and blood sample was sent from Aberdeen to Yorkhill Children's Hospital in Glasgow to try and determine the problem.'

'The result came back, and Shon was diagnosed with Maple Syrup Urine Disease (MSUD).'

MSUD is a rare but serious inherited condition. It means the body cannot process certain amino acids (the "building blocks" of protein), causing a harmful build-up of substances in the blood and urine.

'One of the characteristic symptoms of MSUD is sweet-smelling urine, which gives the condition it's name.'

'He was kept in NICU and given special milk that was safe for his body to digest.'

'Shon spent the first three months of his life in hospital.'

'Eventually, he was healthy enough to return home, however he would be in and out of hospital at Inverness and Glasgow for the next ten years for check-ups and procedures.'

Liver Transplant

If a person with MSUD receives a donated liver, they'll no longer be at risk of a metabolic crisis and can have a normal diet.

However, having a liver transplant is a major procedure with its own risks.

Patients need to take medicine to suppress the immune system for the rest of their life to stop the body rejecting the new liver.

'For a long time, I was hesitant for Shon to have the liver tranplant due to the risks involved.'

'When Shon turned five, we started thinking about the transplant. When he was seven, we added his name to the waiting list. When he was 10, we got the call to go down to London for the operation.'

'Unfortunately, there were some complications and Shon had to stay in hospital for some time following the transplant.'

'After two months, we finally got home, but Shon was constantly in and out of hospital and eventually transferred to Glasgow by the ScotSTAR team in an Airplane Ambulance.'

'Shon had developed a blood infection and missed school for a year.'

'Thankfully, his condition has now stabilised and he is able to have a normal diet thanks to the transplant.'

Autism Diagnosis

'Shon wasn't able to sit until he was 15-months-old, couldn't walk until he was over 2, and couldn't talk in full sentences until he was 6.'

'At age 6, Shon was diagnosed with Autism, which helped explain his developmental delay.'

'I'm so appreciative of the psychologists, language therapists, doctors and nurses who have helped Shon grow and to reach developmental milestones.'

'We're so grateful for all of the Metabolic Doctors and Auxilary Nurses across the children's hospitals in Glasgow and Edinburgh and Raigmor Hospital in Inverness who have looked after Shon so well over the years.'

'We also want to say a special thank you to Community Nurse, Tracey Bruce, who has been helping Shon since he was less than six months old.'

'Despite his lifelong health struggles, Shon remains the kindest, most thoughtful little boy. He loves caring for others, especially his two cats Coco and Bubbles and his little brother Lawy.'

'Shon also helps out with the cooking and cleaning and often tells me how much he loves me and how he appreciates everything we do for him.'

'He really is the sweetest boy.'

Charity Support

During his time in Glasgow Children's Hospital, Shon has benefitted a lot from charity-funded services.

'The sensory room has been brilliant for Shon. It allows him to relax and calm down whilst he's in for treatment.'

SHON'S MUM, ASH

'The MediCinema has also been a great distraction for him. On his first visit, he even turned to me and said 'I'm not scared anymore.'

'Shon is fantastic at art and it really helps ease his anxieties when in hospital.'

'For International Nurses Day, he made a drawing of his favourite nurse Laura, and he always enjoys the themed arts and crafts activites the Play Team organise.'

'Shon has also benefitted from special hospital visits organised by the charity, most recently Superhero Day and Star Wars Day.'

'Visits like these really help break up the long days in hospital and make Shon feel special.'