Concerned parents, Alice and Reece, noticed their son Levi had a swollen face when he was just nine days old.
“We had no idea what it could be. Due to the swelling we thought it might be an allergy,” remembers Alice.
At only four weeks old it was discovered little Levi’s kidneys were leaking protein. He endured a series of tests before Alice and Reece were told the difficult and distressing news that Levi was suffering from Congenital Nephrotic Syndrome – a rare and life-threatening genetic disease.
“I had never heard of it before and we discovered that both my husband and I carried the gene,” says Alice.
Congenital Nephrotic Syndrome is an inherited disorder where a baby has protein in the urine which as a result can cause painful swelling of the body. The disease is life threatening; “Without a kidney transplant, the medium to long-term survival would be virtually zero,” says nephrologist Dr Amelia Le Page.
When Reece and Alice were told that Levi required a kidney transplant to survive, both parents immediately offered to be donors.
“We were prepared to do anything in our power to ensure Levi has the best chance at life,” says Reece.
Through testing, it was discovered Alice was the best donor match for her little boy and was told giving Levi a kidney could extend his life until he is about 12 years of age, when it is expected his body will start to reject the donated organ. If and when this happens his father Reece will donate one of his kidneys, gifting Levi with the chance of many more years of life.
Levi’s family are incredibly grateful for the staff, specialist medical equipment, care and support which helped to save Levi’s life. He went through his final surgery in March this year.
“We want to see Levi grow into the outgoing young man he will become. I think he will be a firefighter or performer when he grows up, with all that energy and charisma,” says Alice.
Children like Levi rely on complex dialysis machines and blood pressure tests to give them the best chance at a healthy future. Levi continues to visit the Monash Children’s Hospital dialysis unit three times a week for routine tests, to ensure his new kidney is functioning well.
Alice knows the importance of her son remaining still and calm during these procedures – which is sometimes a challenge for an outgoing two year old boy. Support from donors enables Monash Health to invest in items to distract and entertain our young patients, so doctors can continue to provide our sick children the best possible care.
To support patients like Levi at the Monash Children’s Hospital contact the Monash Health Foundation via phone on (03) 9594 2700 firstname.lastname@example.org.
Pictured above: Today Levi is an energetic and fun-loving little boy.
Pictured above: Mum, Alice and Levi whilst he receives care at Monash Children’s Hospital.