A is a happy, loving and extremely caring little boy. He has ambitions to become a doctor one day to help poorly children like him and make them smile. He was born with a rare kidney condition known as congenital nephrotic syndrome.

A’ s condition unfortunately developed into chronic kidney disease. He spent the first 2 years of his life in and out of hospital for various reasons. At the age of 6 months he was transferred from the intensive care unit onto haemodialysis followed by peritoneal dialysis.

This was followed by surgical insertion of a feeding tube in order to get nutrition and essential medications to prepare him for a life saving kidney transplant. A struggled to get a match on the transplant list but thankfully a family member was able to donate and he was able to have a kidney transplant at 2 years old. Unfortunately, this was short lived after 5 years of various complications his body began to reject his new kidney and once again he faces the prospect of needing another kidney transplant. This is complicated for A as he is now highly sensitised due to the various treatments and medications he has been on over the years and is unlikely to get a match. If luck is on his side and he gets a match after many years of waiting this would be very high risk.

Until this prospect becomes a reality A requires haemodialysis , a very complex treatment involving the removal of blood from the body to be cleaned via a machine and returned to the body. A needs this treatment 3 times a week and is having to travel to hospital for up to 5 hours each time. This treatment is required indefinitely for his survival. A occasionally struggles with this treatment as he becomes symptomatic with low blood pressure and he has suffered from seizures because of this.

This has lead to further complications as he was diagnosed with a haematoma on the brain which can be a side affect of the blood thinning medicines he is given on dialysis. A’s only hope of having an opportunity to enjoy the remaining years of his childhood with this invasive, restrictive and risky treatment is by having a gentler form of treatment 4 times a week at home. This will reduce the stress of travelling to hospital as A is also autistic and suffers from ADHD. He is very particular about time keeping and can get agitated if there are any delays or changes in his routine. He also has mobility issues due to renal bone disease and various mineral deficiencies due to his condition and treatment causing general fatigue.

We have started training and in the process of starting home dialysis. This has not yet been possible as we need to make changes to the house and create enough space for his existing feeding and toileting requirements as well as additional storage and allocated space where he can safely have his treatment.