The little boy who can’t eat
Toddler Aaron Lipschitz has a rare illness which means he cannot eat without becoming seriously ill
Aaron Lipschitz has never shared a meal with his parents, had a slice of his own birthday cake or savoured the taste of a sweet.
The Cape Town toddler cannot eat food without becoming seriously ill and so every evening at 7pm, he is hooked up via a port through his heart to receive a 12-hour intravenous feeding.
Aaron is the first South African to be diagnosed with Interleukin-12 Receptor Defect, a rare, incurable disease that affects his immune system.He can consume only water, ice, a specialised formula, and an intravenous treatment commonly used for coma patients that bypasses the process of eating and digestion, which costs R100,000 a month. The family’s medical aid covers the cost of the intravenous feeding.“It seems like his immune system can’t distinguish what to fight. A normal person’s body wouldn’t attack food protein but he has diarrhea and vomiting. The worst symptom is actually severe stomach pain,” his mother Taryn Lipschitz explained.
She said of the few known cases of Interleukin-12 worldwide, Aaron is the only one who cannot consume food.
“The food issue is not really a common symptom. Doctors don’t really know why he can’t eat,” said Lipschitz.It took a number of hospital visits and countless tests to determine that Aaron was not only allergic to breast milk but that any food item other than formula caused severe pain and discomfort for him.
Up until a few weeks ago, the toddler drank a bottle of Neocate formula every two hours.
“He had his tonsils and adenoids removed so we don’t know if he can now smell and taste the formula. He went on strike and for a two-week period only had ice and water.”
“We now had to insert a nasal gastric tube so every time I want to give him a bottle, I have to hang the bottle up on a drip and have to connect it to that tube so that runs through his nose into his stomach,” Lipschitz explained.Now their only hope for Aaron to lead a health life is a bone marrow transplant.
“Aaron will require multiple chemotherapy sessions and eventually a bone marrow transplant when a donor match is found. Specialists would essentially need to build Aaron a new immune system.
“Doctors are unsure if this transplant will help Aaron eat but they are hoping he will tolerate some foods after this procedure,” Lipschitz explained.
Hundreds of benefactors have donated more than R1.2-million to the family’s target of R1.5-million on crowdfunding site BackABuddy to allow the toddler to undergo the operation.In his short life Aaron has already battled septicaemia – poisoning of the blood – twice.
He spends many afternoons at the Cape Town Mediclinic where needles are inserted into his legs to administer immunoglobulin, to tackle his vulnerability to infections.
“He knows the name of all his medications and, although he hates treatment, he accepts the pain and discomfort like a soldier going into a battle,” his mother said.
Besides being in and out of hospital, Aaron still attends school with a nurse, goes to birthday parties and even grocery shopping with his mom.
On his birthday he blew out candles on a polystyrene cut-out of the number three.
“Aaron understands that he can't eat because food makes him sick. He doesn't show much interest in food because he hasn't experienced eating so doesn't really know what he is missing out on. We don't feel comfortable eating in front of him because we can't share our food with him,” said Lipschitz.
The closest the family have come to sharing a “meal” is when they pop into a coffee shop.
“My husband and I will have a cup of coffee each while Aaron will have crushed ice. He loves crushed ice,” Lipschitz said.