World Kidney Day - Charlie Bryant: Living with nephrotic syndrome
Charlie Bryant was just 20 months old when he was first diagnosed with nephrotic syndrome, a condition that causes the kidneys to leak large amounts of protein into the urine. It would prove to be the beginning of a long relationship with Birmingham Children’s Hospital as he began his journey to recovery.
In September 2010, Charlie’s parents Gareth and Louise, became concerned as Charlie seemed to be constantly ill with colds and other sicknesses. They had started to notice swelling around his eyes and abdomen so took Charlie to their GP for what they hoped would be a routine check-up. After being referred immediately to A&E, it was discovered that the swelling was due to a protein leak in his kidneys and Charlie was diagnosed with nephrotic syndrome, a condition that affects around 1 in every 50,000 children each year.
Gareth recalls how he felt at that initial diagnosis, he said: “It was a relief in some ways to find out what it was and that it was treatable. The doctors explained what to expect from the diagnosis and helped to put our minds at rest.”
Charlie stayed in hospital for 10 days under the care of Dr Larissa Kerecuk, Consultant Paediatric Nephrologist, as she worked to manage the swelling and bring his symptoms under control with intravenous steroids and a protein infusion to control the protein in his body and balance his fluids. Following his time in hospital, Charlie returned every two months for the next year for regular consultations to monitor his progress and was thankfully soon in remission.
In the years that followed, Charlie continued to attend regular appointments for blood tests, checks on the protein levels in his urine as well as monitoring his kidney function. He was prescribed 45mg of steroids, immunosuppressants and occasionally, antibiotics. Charlie has even taken part in a few medical trials to help research into the condition in the hope that it might help others in the future.
Gareth said: “We wondered when Charlie was first diagnosed whether we should go with private healthcare but after seeing how well he was treated we soon realised he’d get the best care at BCH. Both my wife and I cannot express how grateful we are for the care and attention given to Charlie and our family by Dr Kerecuk, her team and BCH.” 
As a result of the family’s positive experiences at BCH, Gareth was keen to give something back by way of supporting our charity. His fundraising activities have included a sponsored cycle ride around the island of Majorca raising over £3,000 for Ward 1 (our renal ward). When Charlie’s grandfather sadly died during the COVID-19 pandemic, a memorial fund was set up for donations raising over £3,000 for the hospital. Gareth intends to run next year’s London Marathon to raise even more money for the charity.
Now aged 13, Charlie has adapted well and the condition is just another part of everyday life. He lives a happy, normal life; is very active and loves to play football. He is doing well at school and takes it all in his stride. His condition causes occasional relapses but for the most part he has continued in remission. For the past few years, he has been doing his own home tests to monitor his symptoms and takes his steroid medication himself which is now down to a 10mg dose every other day. Thankfully most children outgrow nephrotic syndrome as they reach their late teens and according to Dr Kerecuk, Charlie’s progress shows that he is on course for that to be the case.