Three times a week, 12-year-old Raphael Wolfenden and his parents Emily and Mark, make their way to Monash Children’s Hospital for six hours of treatment. Rain, hail or shine – no matter what, you’ll find them on the ward.
Raph lives with a genetic condition known as congenital nephrotic syndrome, more often referred to as kidney disease which often results in kidney failure. This condition is lifelong with no cure and requires varying treatments depending on the unique needs of the patient.
“Raphael is in renal failure, so we have to come to Monash three times each week for haemodialysis because he has no functioning kidneys,” says Emily.
Raph received his first donor kidney from Emily when he was 2.5 years old however the organ recently failed, meaning he requires dialysis to perform the failed kidney’s job.
The Wolfenden family are unfortunately all too familiar with kidney disease. Raph’s older brother Sebastian, now 24 years old was also born with congenital nephrotic syndrome.
“Sebastian has had two failed kidney transplants, and as a result has been on and off dialysis either at home or in hospital,” explains Mark.
As a result of his condition, Raph doesn’t get to do a lot of the fun things that so many children take for granted. He does his schooling at home, as his dialysis treatment is not conducive to a traditional schooling environment.
“Activities revolve around dialysis, his diet, how much energy he has on that particular day – it can be tough for him some days,” said Emily.
Raph’s favourite things to do include playing with his dog, hanging out with his friends and gaming, especially with his older brother Sebastian.
“Because of my kidney problems, I need to take lots of medications to help me grow, including an injection every night,” says Raph, who is incredibly articulate when it comes to explaining his condition.
“Having a transplant is not a cure, it’s just a treatment. A transplant might only last twenty years, not everyone understands that” says Emily.
“I am fortunate in that I can do my dialysis at home during the night, leaving my days free”, explains Sebastian.
“I do however know all too well what it’s like to be in Raph’s shoes – but I’m also proof that you can achieve your goals and live your dreams while managing kidney disease.”
Sebastian is certainly living proof of that. Having recently graduated from SAE Quantum (a media institute) with a degree in sound engineering. Plans for the future include being a sound engineer in the television industry and working as an online e-sports commentator for the Asian region.
Dr Lilian Johnstone, Head of Paediatric Nephrology at Monash Children’s Hospital emphasizes the impact chronic kidney disease has on patients and their families.
“Caring for a child with serious renal conditions can be incredibly intrusive on what we consider a normal way of life,” Dr Johnstone says.
“Parents often have to give up work to ensure they can attend dialysis sessions multiple times per week, the children can’t partake in usual activities such as swimming and things like family holidays have to revolve around access to medical care.”
Dr Johnstone is hopeful that the funds raised at the walk will greatly assist the Nephrology Department in ensuring better outcomes, especially when it comes to the mental health and well-being of their young patients as they transition into adult care.
“We’re really pleased to be the recipient of donations generated at this years walk and encourage our community to get behind the event.” says Dr Johnstone.
To register for the 2024 Monash Children’s Hospital Walk, visit www.mchwalk.com.au.
Click below to learn more about Raphael’s journey.
