BackaBuddy, a non-profit organisation, is hosting a campaign for Sea Point resident, Aaron Lipschitz, aged 3, known as the boy who cannot eat.
At two weeks old Aaron was diagnosed with Interleukin-12 Receptor Defect, a rare incurable disease that affects one’s immune system.
Aaron’s parents Taryn and Steven Lipschitz noticed that he was responding negatively to feeding and decided to take him to hospital, however, Taryn describes an easy pregnancy and an uncomplicated birth of her son.
Aaron is known to be the first South African diagnosed with the deficiency and of the known few cases worldwide, he is the only child who is unable to consume food. His diagnoses was followed by numerous hospital visits and countless tests to determine that Aaron was not only among the 0.1% of babies born allergic to breast milk protein, but that any food item, formula or liquid, excluding water caused severe pain and discomfort for Aaron.
For the first two years of his life, Aaron had to take a pancreatic enzyme pill called Creon in order to digest an expensive formula called Neocate, which he had to take every 2 to 3 hours.
In October 2017, doctors found that the formula was no longer providing Aaron with enough nutrition to accommodate his growth and he was fitted with central lines and catheters to begin Total Parenteral Nutrition – the feeding of a person intravenously, bypassing the usual process of eating and digestion – which is commonly used for coma patients. “A port runs through Aaron’s heart and every evening he is fed intravenously, avoiding his digestive system,” said Taryn.
For a toddler, he had experienced many challenges, from being exposed to blood tests, drips, ultrasounds, hundreds of hospital visits and MRI’s to consultations with immunologists, gastroenterologists, neurologists, paediatricians, allergists, haematologists, oncologists, dieticians and occupational therapists to name a few.
He spends many afternoons at Cape Town Mediclinic under the management of paediatrician Dr Deon Smith and can recite all his medications without fail. To allow his immune system to work more effectively, needles are inserted into legs to administer immunoglobulin (a large, Y-shaped protein produced mainly by plasma cells that is used by the immune system to neutralise pathogens such as pathogenic bacteria and viruses). Without this treatment, Aaron is vulnerable to infections. At the age of one, Aaron almost died from septicemia-blood poisoning – and has just survived another episode of septicaemia this month.
Apart from being in and out of hospital, Aaron attends school at Alon Ashel Pre-Primary in Sea Point , birthday parties and goes grocery shopping with his mom. At this stage, he seems undeterred by food as it’s something he is unfamiliar with.
Taryn said: “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’s missing out on. We don’t feel comfortable eating in front of him because we can’t share our food with him. We think he might be starting to notice that there might be something different about him, but thankfully he is still young enough that he is not self-conscious about his feeding port or NG tube.”
In order for Aaron to lead a healthier life, he will need 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 which is costly procedures. Taryn and Steve set up a campaign on donations-based crowdfunding platform, BackaBuddy, to appeal to the public to support their little boy while he fights his condition.
The campaign has so far secured R1 245 350.57 towards his fund-raising target of R1 500 000.
If you would like to donate to Aaron’s crowdfunding campaign visit www.backabuddy.co.za/champion/project/save-aaron
“We have been completely blown away by our BackaBuddy experience. For the first three years of Aaron’s life we tried to manage without community support, both emotional and financially. It was a big step for us to share Aaron’s story and ask for the help we need. Our BackaBuddy campaign has completely exceeded our expectations,” says Taryn.
The public can support Aaron in two ways, by donating to his BackaBuddy crowdfunding campaign or registering as a bone marrow/stem cell donor.
Aaron’s parents are urging the public to get onto the Sunflower website and register as a bone marrow/stem cell donor. Taryn said: “The process is as simple as making a phone call, filling out a form and having two vials of blood taken.You could save Aaron or another person waiting for their miracle.”