Save Aaron, the boy who cannot eat

TALI FEINBERG

But there is one difference: Aaron has never consumed a morsel of food. His mother, Taryn, had an easy pregnancy and birth, but knew early on in Aaron’s life that something was wrong.

What has happened is the stuff of nightmares, and it is only just beginning.

An occupational therapist, Taryn is married to Steven, a copywriter. The young couple were just like any other when they had Aaron, their first child, and Taryn was determined to breastfeed. But their dreamy picture of parenthood was shattered when Aaron was admitted to hospital at just two weeks old, as doctors tried to figure out why he could not tolerate his feeds.

More than 50 hospital visits later, it was discovered that Aaron was not only among the 0.1% of babies who are allergic to breast milk protein, but that any form of food – formula or liquid (except water) – causes a violent reaction and extreme pain. Even touching food or certain materials affects him.

“When it came to starting him on solids, we tried to give him a syringe of water from a pot of boiled vegetables, but even that made him sick for weeks,” says Taryn. That was the closest he ever got to eating. All little Aaron can tolerate is the infant version of a very specialised baby formula called Neocate, and he needs to take a pancreatic enzyme pill called Creon before drinking it.

A bottle of Neocate every two to three hours, day and night, at a cost of R500 for a small tin, is what kept Aaron alive. But by October last year, the formula was no longer enough to keep him nourished. He then had numerous operations to insert central lines and catheters so that he could start Total Parenteral Nutrition, known as TPN.

“It’s the nutrition given to a person in a coma to keep them alive,” says Taryn. “It means Aaron is fed intravenously, avoiding his digestive system.” A port runs through his heart and every evening, his parents don medical scrubs and gloves to administer the TPN. They are often up with him all night, as his pain and nausea make it difficult for him to sleep.

“Because Aaron cannot calm himself with food, he has learned to regulate his emotions very early on,” says Taryn. The couple try to avoid eating in front of him, and the lack of a routine around meals means a very long day for Aaron and his parents.

At the same time, the family have never excluded Aaron from the life of a toddler – he attends parties, has play dates and sits in the trolley during grocery shopping. Herzlia Alon Ashel has been extremely accommodating in allowing him to attend while still working around his needs.

Aaron currently has two lives. He attends school, Clamber Club and Kindermusik with his friends in the mornings, and in the afternoons he is often at hospital, where needles are inserted in his legs administering immune globulin to make his immune system function effectively. 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.

Before this immune-boosting treatment, Aaron picked up infections, including salmonella, easily. He almost died of septicaemia as a one-year-old. “I took him to an emergency room and they told me it was gastro,” says Taryn. If she had not rushed to another one, her son would be dead.

In this instance and so many others, she has had to trust her instincts and fight for her son. She is thankful for Dr Deon Smith at Cape Town MediClinic, “who believed me from day one”. She’s also grateful for her family –and for Aaron’s loyal day and night nurse, Faith.

After hundreds of tests, Aaron’s doctors only recently reached a diagnosis: Interleukin-12 Receptor Defect, which means the cells in Aaron’s immune system are not communicating effectively and, as a result, he is unable to fight infections. He is the only known child to have it in South Africa. And of the few known cases worldwide, Aaron is the only child who is unable to consume food.

There is no cure, but doctors hope that chemotherapy, followed by a bone marrow transplant, will wipe out Aaron’s defective immune system and give him a new, functioning one.

If he does not have this treatment, he will most probably contract an infection and develop fatal septicaemia. “My goal right now is to get him to his fourth birthday,” says his mother. The family are currently searching overseas for a donor, as there are no matches in South Africa.

While the past three years have been a blur of blood tests, drips, ultrasounds, hundreds of hospital visits, MRIs, consultations with immunologists, gastroenterologists, neurologists, paediatricians, allergists, haematologists, oncologists, dieticians and occupational therapists, the family’s fight is just beginning.

“Aaron still faces his biggest challenge yet. For the past three years, we have tried our best to manage this difficult situation on our own. The financial toll on our family is becoming overwhelming and we realise that we need to ask for financial help to keep moving forward and doing everything we can to save our son,” say Taryn and Steven.

They have therefore set up a fundraising page, which can be found by searching the BackABuddy website for the Save Aaron campaign. “Any donation, big or small, will mean more to us than you ever know.”

Despite his struggle, Aaron is an easy child – he loves life and every outing is an adventure. He accepts that food is not for him, but did ask his mother to “put ice cream in my TPN” and longs to make challah on a Friday at school, instead of plaiting play-dough. With your help, those dreams could come true.

To donate, please visit https://www.backabuddy.co.za/champion/project/save-aaron