World Kidney Day: Noori’s Story

World Kidney Day (WKD) is an annual global awareness and education event, held on the second Thursday in March every year. This World Kidney Day, hear from hospital Mum, Nosheen, whose son Noori is living with kidney failure. 

‘At just six years old, our youngest son Noori was diagnosed with End Stage Kidney Failure.’

‘When we received Noori’s diagnosis, we decided to move our family from Edinburgh to Glasgow in order to be closer to the Scottish Paediatric Renal Service which is based at the Royal Hospital for Children (RHC), Glasgow.’

‘For the past three years, 9-year-old Noori has attended Ward 3C at the children's hospital for dialysis four times a week and spends up to five hours at a time on the dialysis machine.’

‘Although the Haemodialysis treatment is keeping him alive, it is only a temporary fix, and Noori will require a kidney transplant in the future.’

‘Since going in to kidney failure three years ago, Noori has also had repeated episodes of pancreatitis.'

'There is no cure for this condition and it causes a lot of pain for Noori, so it is crucial that he receives a kidney transplant soon.’

‘This time last year, Noori was in a critical condition, and we were told that he might not make it. It was a heartbreaking time for our family.’

nosheen, noori's mum

‘Thankfully, Noori’s medical team were able to stabilise his condition, but ultimately a kidney transplant is the only thing that will save him.’

‘Noori’s older brother Radwaan (14) is also a patient at the children’s hospital. Radwaan is living with the rare and extremely painful condition called Epidermolysis Bullosa (EB) or ‘Butterfly Skin’.

‘It’s hard enough having one child who requires hospital care, let alone two, but the hospital have been very accommodating and try to organise it so that Radwaan’s appointments fall on Noori’s dialysis days to save us making even more trips back and forth to the hospital.’

‘Ward 3C is amazing! All of the staff are wonderful and have become like family to us.’

Nosheen, Noori’s Mum

‘As the young patients on dialysis are in hospital so frequently and for such long periods of time, you get to know all the other parents and families really well and build up a strong support system.’

‘We always celebrate each other’s birthdays together on 3C and decorate the ward for special days like Mother’s Day.’

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‘The Play Team are a great distraction for Noori. They always bring in different arts and crafts to keep him busy and keep him company during long days in hospital.’

‘He also benefits from special visits organised by Glasgow Children’s Hospital Charity, like the Glasgow Warriors Rugby Team and Celtic FC at Christmas.’

‘Noori absolutely loves to visit the MediCinema and has been many times with his brother Radwaan and his sister Firdaus.’

‘A trip to the MediCinema gives young patients like Noori something to get excited about and look forward to, and just takes the edge off the anxiety and boredom that come from being stuck in a hospital environment.’

nosheen, noori's mum

‘We’re eternally grateful to the wonderful staff at the children’s hospital who look after Noori and for charity-funded services like the Play Team and MediCinema.’

‘Although the future is uncertain, we know that Noori is under the best possible care at Glasgow children's hospital and remain hopeful that he receives a transplant soon.’