Aaron Lipschitz (3) from Sea Point, Cape Town, is the first South African to be diagnosed with Interleukin-12 Receptor Defect, a rare incurable disease that affects his immune system,. Of the few known cases worldwide, Aaron is the only child who is unable to consume food.
Play therapist and mum Taryn, describes an easy pregnancy and an uncomplicated birth of her son Aaron, but at only two weeks old, Taryn and husband Steven noticed that Aaron was responding negatively to his feeds and he was rushed to the hospital.
It took a number of hospital visits and countless tests to determine that Aaron was not only among the 0.1% of babies who born are allergic to breast milk protein, but that any food item, formula or liquid, excluding water caused severe pain and discomfort for Aaron.
“It’s still so difficult to process. We are an average couple without any significant medical history so to have such a unique child as been really surprising to us” – says Aaron’s parents.
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. His body couldn’t tolerate anything else.
By October 2017, doctors could see 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 which commonly used for coma patients.
“A port runs through Aaron’s heart and every evening he is fed intravenously, avoiding his digestive system.” – says Taryn.
At 3 years old, Aaron is no stranger to the hospital. He’s been exposed to blood tests, drips, ultrasounds, hundreds of hospital visits, MRIs, 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. Without this treatment, Aaron is vulnerable to infections. At the age of one, Aaron almost died from septicemia for this reason. He has just survived another episode of Septacaemia this month.
“He knows the names of all his medications and although he hates the treatments, he accepts the pain and discomfort like a soldier going into battle.” – says Taryn.
Besides being in and out of hospital, Aaron sill attends school, 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.
“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. 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. “ – says Taryn
The only hope of Aaron leading a healthy life 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.
Aaron’s parents 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 went live on the 31 of January 2018 and has so far secured R1 271 430.79 towards his fundraising target of R1 500 000, with the contributions from over 675 donors. Single donations have ranged from R100, to R300 000 from national and international donors.