Transplant now only option for young Pretoria east boy suffering from liver disease
When he was 11 years old, Liam Pretorius life changed from that of a boy with an active lifestyle to someone who had to slow everything down.
Liam Pretorius’ mother used to call him “my Boerboel puppy” because he was so healthy.
“I was always thinking I am so blessed to have such a healthy and happy child,” said Amelia Pretorius from Pretoria east.
They used to live on a farm where Liam had two of his own horses he used to care for by grooming and feeding them and cleaning out stalls regularly.
And then in 2022, the 11-year-old had the first symptoms of an illness that would lead to a liver disease diagnosis.
“This disease is very rare, especially in children and at his age,” said Pretorius.
He was diagnosed with autoimmune ulcerative colitis, of which the symptoms can include abdominal pain, diarrhoea, blood and mucus in the stool.
Liam also was diagnosed with primary sclerosing cholangitis, where the bile ducts inside and outside the liver become inflamed and scarred and eventually narrowed or blocked. When this happens, bile builds up in the liver and causes further liver damage.
Today there is only one option to save his life: He is now on the list for a liver transplant.
“It is very heartbreaking to see my once very active child being bedridden and having to sleep most of the time,” said Pretorius.
Liam used to be a keen horse rider and loved his bike, both activities he had to stop because his illness progressed so fast that he now suffers from rheumatoid arthritis, autoimmune hepatitis and jaundice.
Last term, Liam spent a total of four days at school in February. The rest of the time was spent at Donald Gordon Medical Centre’s transplant unit and a clinic in Midrand.
He is currently in Grade 7 and according to his mother, maintains a high overall average.
“It is so difficult to see someone so young being so ill,” said Pretorius.
Liam is in constant pain due to the rheumatoid arthritis and severe body inflammations.
There have been huge lifestyle changes in the family’s lives. Liam is a vegetarian and can only consume special lactose-free dairy products and gluten-free food.
As he has no immunity against airborne viruses, he needs to wear a mask and use a sanitiser.
“We are trying everything just to cope and to get by until a liver becomes available,” said Pretorius.
For Pretorius, the waiting game for a liver transplant began a while ago when she heard that a liver might be available to him in 10 years.
Because of his illness’ fast progression, this has been brought down to 12 to 18 months.
“His condition has deteriorated faster than expected,” said Pretorius.
“We tried everything to slow the illness down. At present he is on biologicals as a treatment as because of his liver condition, he is unable to even take a pain pill,” said Pretorius.
Even with medical aid, Pretorius has been advised by the Donald Gordon Transplant Unit in Johannesburg to have at least R800 000 available for his continuous treatment until the transplant and for the cost of the transplant.
“We’ve only raised R3 500 so far,” said Pretorius. She has a full-time job and it has become a challenge to make ends meet.
“I want to do everything I can to ensure my son has the best options available so he lives his best life for as long as possible,” said Pretorius.
Since February and the biological treatment, Liam has had no immunity and has been unable to attend classes at his home school centre.
“Most of the time, he only has his computer tablet as a companion as he cannot be exposed to germs,” explained Pretorius.
To help her son, she recently started a BackaBuddy campaign.
“I will be so grateful to anyone who would be able to help me help my son use the one option, a liver transplant, for his incurable disease,” said Pretorius.
Contact Pretorius on 072 267 5567 or tamatiepit@gmail.com if you wish to help.
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