Aaron Lipschitz’s supernatural survival
By: Sarahbelle Selig
When doctors diagnosed three-year-old Aaron Lipschitz with a rare genetic disorder, a bone marrow transplant became his only chance at survival. The transplant saved his life – but almost took his life in the process. Thanks to a pioneering medical team, a dedicated community, and more than a few miracles, Aaron and his parents have withstood every family’s nightmare – and Aaron continues to defy the odds, every day of his life.
The first thing you notice about Aaron Lipschitz is his energy. A six-year-old with a permanent smile, Aaron loves everything a child his age should: putt-putt, soccer, tennis, his school friends, swimming lessons, and his dog, Luna. Aaron is also incredibly bright; he taught himself to read at five years old, and is thriving at Alon Ashel Pre-Primary in Sea Point, Cape Town.
But what you may not realise when you meet him is that Aaron has spent almost half of his life in the hospital. In a handful of years, Aaron has survived more medical hurdles than most of us have to endure in a lifetime.
The long road to a diagnosis
For the first two weeks of Aaron’s life, he was a perfectly healthy child. But he soon developed a temperature and serious diarrhea. The doctors weren’t extremely concerned at first, as gastronomic problems are common with young infants. Four weeks later, though, Aaron was back in the hospital, experiencing incredible discomfort with feeding. The doctors thought it was reflux disease. Then a protein intolerance. Perhaps a multiple food allergy symptom, or even inflammatory bowel disease. Taryn, Aaron’s mother, went on a very strict diet to help ease Aaron’s pain, but there was still no relief. Ultimately, doctors diagnosed Aaron with a metabolic absorption disorder, meaning he was unable to tolerate any food or breast milk – only water.
Then, things got a whole lot worse.
At about a year old, Aaron experienced what would be his first of several Salmonella Septicaemia episodes, or a salmonella infection in the bloodstream. His antibody levels plummeted. His primary care paediatrician, Dr. Deon Smith of Cape Town’s Mediclinic, quickly put him on immunoglobulin treatment to boost his immune response and Aaron pulled through the infection – but it wouldn’t be his last.
For the next two years, Aaron’s life-threatening infections and complete intolerance of food baffled his doctors. Without a diagnosis, Aaron survived on a specialised hypoallergenic formula which he received first through a bottle and later via a nasogastric tube when the quantity of milk needed to sustain him became too much for him to drink. He also received Total Parenteral Nutrition, or intravenous feeding, via a brachial catheter that ran through his heart. Aaron experienced three Septicaemia episodes in as many years.
Finally, when he was three, Aaron’s medical team conducted genome sequencing and discovered his interleukin-12 receptor defect, a defect in the receptor in the human body responsible for activating the immune system, which was preventing Aaron’s body from fighting minor infections. The interleukin-12 defect affects fewer than 300 people worldwide and Aaron is the only child in South Africa to be diagnosed with it. There is no cure for the defect.
On their own, a metabolic absorption disorder and an interleukin-12 receptor defect are scary diagnoses. But to have them both – a severe gut problem and an immunodeficiency problem – is both incredibly rare and incredibly dangerous.
Always in the hospital
Those first several years were a massive challenge for the Lipschitz family. Aaron was in the hospital twice weekly to receive his immunoglobulin treatment, intended to boost his immune system and fight off his recurrent infections. Birthday parties, holidays, and even dinners at home were a challenge, because Aaron didn’t understand why he couldn’t eat like everyone else. Aaron’s family accumulated massive medical debt to cover expenses of hospital visits, investigative procedures, weekly treatments, and formula, which alone cost R500 a tin. At home, feeding time was a complicated routine.
Dr. Smith applauded Aaron’s parents, Taryn and Steven, for how meticulous they were with Aaron’s care. “Every evening at home, they would have to fully gown-up, mask, the whole bit, to set up Aaron’s intravenous feeding which ran overnight,” he explained. “This whole procedure had to happen in completely sterile conditions twice a day. When I tell colleagues at the hospital that Taryn and Steven did this at home all that time by themselves, they can’t believe it.”
Dr. Smith, who is now retired, said that Aaron’s case was his most challenging in all of his years as a medical practitioner. Aaron’s case would keep him awake at nights, as he sorted through all of the options. Because Aaron’s case is so rare, there was very little precedent that the medical team could look to when making decisions about his health. They did extensive research, coordinating with each other as well as with the National Institute of Health in the United States and a number of experts worldwide.
Because there was little precedent, Taryn explains that she and Steven relied on gut feeling and the advice of their medical team in making decisions for Aaron’s health. “Our team really did their homework,” Taryn said. “We said, ‘Just do whatever you need to do.’ We were the ‘Yes’ parents.”
Taryn explained that the infections came so often that they were always ready to take Aaron to the hospital. “We lived in a constant state of preparation. In our garage, we always had bags packed, because we knew he would get an infection and we’d be going back.”
Being so frequently in the hospital meant that Aaron created close bonds with the staff. Dr. Smith reflected on one story he said encapsulated the type of child Aaron is. “When he was in hospital, he would go to the vending machine and get snacks to feed the nurses. He would get a Bar One. He would hand out Jelly Tots to everyone. He was always feeding people. For a child who can’t eat to do that – it was incredible.”
The search for a miracle
At age three, when Aaron endured a third, almost fatal attack of Septicaemia, his doctors decided to undergo a bone marrow transplant.
“It was very clear to all of us that we had no choice but to embark on a transplant,” Dr. Smith explained. “The formula was so expensive, and any slight change to it, he would react. A transplant was the only hope he had to have a normal life.” Before his transplant, Aaron’s parents had spent over R250 000 on formula alone.
The transplant would be a risky procedure, but the team relied on each other and expert opinions around the world in the decision to move forward. “It wasn’t taken lightly,” Dr. Smith said, “And it wasn’t just us. It was a wider international community of specialists who guided us and said this really is the only way forward.”
Once the decision was made, the medical team contacted the South African Bone Marrow Registry (SABMR) to begin searching for a bone marrow donor for Aaron. Together, Aaron’s community and the SABMR kicked off massive donor drives across the country. In a single week, dubbed Save Aaron week, over 500 new donors were registered, and that number grew as drives expanded in Johannesburg and Cape Town, initiated by Aaron’s day school and faith community. Dr. Smith called the SABMR “extraordinary” in its pursuit of a donor for Aaron.
Aaron’s parents also started a fundraising campaign on BackaBuddy.co.za, which became the site’s highest grossing fundraiser for an individual ever at over R1,5 million from almost one thousand donors.
Friends, family, and even strangers jumped on board to help. Supporters ran marathons and competed in cycling races to raise money, schools and organisations hosted fundraisers, and friends and school parents cooked meals for the family when Aaron was in and out of the hospital. Cheryl Lazarus, principal at Aaron’s pre-primary school, helped organise a challah bake with the school’s Parent Teachers Association. “Friends came, parents of friends came, friends of friends came,” Cheryl said. Even Dr. Smith was in attendance.
Taryn credits the incredible community response to her son’s nature. “His story, it’s so inspiring. Despite what he’s gone through, he’s very positive and happy and lives life to the full. I think people resonate with that. There’s no medical reason that he should be here, so I really do think it was the power of the community’s prayer and efforts. There were prayer groups every day.”
Aaron’s miracle donor was finally found in 2018.
The transplant goes awry
In August 2018, Aaron received his bone marrow transplant. As Taryn would say later, the transplant saved his life – but he almost died in the process.
About halfway through the transplant, Aaron started to get so sick that they stopped, completing the second half the following day. Then, in the words of Dr. Smith, “all hell broke loose”.
About a week after the transplant, Aaron had an extremely rare reaction to the transplant called a ‘Cytokine Storm’. In order to receive the transplant, Aaron had to undergo intensive chemotherapy to destroy his current immune system. But when his body received the new bone marrow, some old cells that remained woke up for the first time and started to fight against the incoming marrow. Aaron was rushed to the intensive care unit at Red Cross Children’s Hospital, where he underwent multiple blood and platelet transfusions. He swelled up with almost 10 kilograms of excess fluid. Finally, he received a biological injection to destroy the remaining 10% of his immune system that was fighting back against the transplant, which stabilised him. Doctors would later discover another genetic variant, FOXP3, that possibly contributed to the reaction.
On top of this reaction, the transplant physicians also found Adenovirus in Aaron’s lungs during the transplant. Dr. Smith explained that if a patient gets Adenovirus in their bloodstream after a transplant, it’s a 100% mortality rate. After the transplant, Aaron’s family had to wait three days to find out if it had reached his bloodstream.
“It was the most horrific three days.” Taryn remembers. “We were prepared for the worst. There were people lining the corridors of the ICU praying for him.”
Thankfully, wonderful news came back: the Adenovirus was not in his bloodstream. Aaron spent the next month in the ICU recovering from the transplant and the reaction, and another three months in isolation. According to Dr. Smith, Aaron’s friends and family had lined up games and toys to play with after the transplant, but he was often so sick he couldn’t play with any of it.
“Try putting a three-and-a-half-year-old in a room for three months,” Taryn said. “Especially one that’s sick, some days so sick he couldn’t even watch Paw Patrol. One day his face was so swollen that his eyes were swollen shut. Imagine!”
Taryn recounts that month in the ICU, saying the family was in “flat-out survival mode”. She took several months off work to be in the hospital almost full time.
“We were in full suits, masks, gowns all the time. Twelve hours a day, Aaron’s grandmother and I were at the hospital while Steven was at work. When he came back, we would go to sleep.” Taryn recounted one or two traumatic drives to the hospital after receiving distressing phone calls from Aaron’s doctors. During one phone call, Dr. Smith was crying.
Despite the horrific days that followed, Taryn still believes the transplant was the right call. “It was always an experiment,” Taryn said. “No one could have predicted what happened.”
No matter what Aaron faced, Taryn truly believed her child would live. “I had a really strong feeling he was going to survive, because of the type of child he was. The doctors thought I was in denial, because I kept saying he was going to pull through.”
But he did. Less than four months after his transplant, Aaron was allowed to go home. He left the hospital in a wheelchair – but with a huge smile on his face!
Moving forward – and getting stronger every year
That smile of Aaron’s is all over Taryn’s phone camera roll. He’s smiling in every single photo, even the ones in the hospital. The array of pictures – Aaron swinging a golf club, in a hospital bed covered with tubes, reuniting with his dog after leaving Red Cross, a picture of his fifth birthday party, of his many surgical scars, and one of Aaron and his friends in class – reflect the Lipschitz family’s complicated reality: trying to give an extremely sick child a chance at a normal life.
Thankfully, since his recovery, Aaron’s time at the hospital has dropped significantly and his doctors have seen a major improvement in his body’s ability to fight infections. The transplant was successful in rebooting his immune system to a certain degree and he’s no longer allergic to everything, but the metabolic absorption problem still persists. Aaron still receives weekly immunoglobulins treatment and has a feeding tube, now in his stomach, but his doctors hope he will soon be able to eat enough food that it can be removed. He’s already tolerating things he couldn’t before, like coconut milk ice cream. Taryn says that being able to eat more food is the next big challenge. In the meantime, Aaron is going regularly to an occupational therapist to overcome his food aversion, which has developed from years of getting sick. He’s also in play therapy and physiotherapy.
With less infections and hospital visits, Aaron can finally go to a normal school. He no longer needs to go to school with a health facilitator, but he regularly visits the administration office for feeding, where four different staff members are equipped to help him.
There are still some fears. Taryn talked about one scare when a classmate of Aaron’s came down with the chicken pox. Because of Aaron’s condition, even a mild chicken pox infection could spread to his brain, which may kill him. “Thankfully it wasn’t chicken pox,” Taryn said, relieved. “But it’s things like that, he could die.”
“We risk his life every day sending him to school, we know that,” Taryn explained. “But you’ll see it when you meet him – you just can’t keep Aaron at home.”
Principal Lazarus commended Taryn and Steven for giving Aaron a real childhood despite his illnesses. “They could have kept him at home,” she said, “but there wouldn’t have been any quality of life. Taryn and Steven really wanted Aaron to have a childhood. Friends, school, extramural activities. So he would come home from the hospital and go to an extramural activity. They have allowed him to live his life.”
Despite the fact that he can’t eat, Aaron has chosen to be a part of eating times at his school. Taryn says that instead of food, he’ll drink water, chew on ice, or even lick a piece of fruit to experience the taste. “He’s so social, he just wants to be a part of it. He didn’t want to go out into the hallway while the other kids were eating.” At birthday parties, he focuses on the games being played rather than the food table. “That’s just his normal,” Taryn said.
Dr. Smith credits Aaron’s parents for his astonishing recovery. “There is no way this boy would have survived without the parents he was blessed with, because they are truly extraordinary. The physical and emotional toll of keeping a child this sick alive is extraordinary.”
For Taryn, Aaron’s medical team deserves the credit. “There was no ego, no who’s right, who’s wrong. It was just, ‘Let’s save this child,’” she said.
At just six years old, Aaron has already touched a lot of lives. “I have learned a lot from Aaron medically but also just being a human,” Dr. Smith said. When he retired last year, Dr. Smith said the hardest part was having to tell Aaron and his family. “I feel like a grandfather to Aaron now. It’s so hard not to, after seeing him almost every day for so many years.”
But it wasn’t just the people Aaron directly interacted with that were affected by him. Dr. Smith said, “Even the genetics team who did his sequencing, who had never even met him… when he was in the Cytokine Storm and we weren’t sure if he was going to survive, I got a picture of the whole genetics team wearing t-shirts with huge As on them in emotional support. He just captured their hearts.”
Through every challenge, Aaron’s community has been amazed by his resilience. “One thing is clear to me,” Dr. Smith noted. “Aaron is going to survive. Look at the conditions he’s had, but he’s pulled through. He has survival stamped all over him. He’s destined for great things, so we’ve got to keep him alive!”
Aaron became a big brother on 27 September 2021, when Taryn gave birth to a healthy baby girl.
Aaron’s miracle donor
Now that the obligatory three-year confidentiality period has passed, the Lipschitz family has begun the process of meeting Aaron’s bone marrow donor. The family has already sent his donor a letter, thanking her for saving Aaron’s life. “It took us a year just to write that letter,” Taryn said. “Because what do you say to a stranger who did that for your child?”
Dr. Smith believes that everyone has the capacity to give such an extraordinary gift, especially when they know a life like Aaron’s may be on the line. “Ordinary people can do remarkable things,” he said. “Aaron just brings that out of people.”
Could you be a donor for a child like Aaron?
There are thousands of patients worldwide waiting for their miracle donors to be found. Register to be a bone marrow donor with the SABMR! Sign up at your next blood donation, or apply directly on the Registry’s website and receive an at-home cheek swabbing kit with a free collection service. Ages 16 to 45 can register. For more information, visit www.sabmr.co.za, call (021) 447-8638, or email donors@sabmr.co.za.
Want to assist the Lipschitz family?
The family’s BackaBuddy campaign is ongoing. If you’d like to donate, please visit their BackaBuddy page at www.backabuddy.co.za/save-aaron.
