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 \u2013 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\u2019s nightmare \u2013 and Aaron continues to defy the odds, every day of his life.<\/em><\/p>\n 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.<\/p>\n 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.<\/p>\n The long road to a diagnosis<\/em><\/strong><\/p>\n For the first two weeks of Aaron\u2019s life, he was a perfectly healthy child. But he soon developed a temperature and serious diarrhea. The doctors weren\u2019t 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\u2019s mother, went on a very strict diet to help ease Aaron\u2019s 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 \u2013 only water.<\/p>\n Then, things got a whole lot worse.<\/p>\n 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\u2019s Mediclinic, quickly put him on immunoglobulin treatment to boost his immune response and Aaron pulled through the infection \u2013 but it wouldn\u2019t be his last.<\/p>\n For the next two years, Aaron\u2019s 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.<\/p>\n Finally, when he was three, Aaron\u2019s 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\u2019s 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.<\/p>\n On their own, a metabolic absorption disorder and an interleukin-12 receptor defect are scary diagnoses. But to have them both \u2013 a severe gut problem and an immunodeficiency problem \u2013 is both incredibly rare and incredibly dangerous.<\/p>\n Always in the hospital <\/em><\/strong><\/p>\n 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\u2019t understand why he couldn\u2019t eat like everyone else. Aaron\u2019s 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.<\/p>\n Dr. Smith applauded Aaron\u2019s parents, Taryn and Steven, for how meticulous they were with Aaron\u2019s care. \u201cEvery evening at home, they would have to fully gown-up, mask, the whole bit, to set up Aaron\u2019s intravenous feeding which ran overnight,\u201d he explained. \u201cThis 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\u2019t believe it.\u201d<\/p>\n Dr. Smith, who is now retired, said that Aaron\u2019s case was his most challenging in all of his years as a medical practitioner. Aaron\u2019s case would keep him awake at nights, as he sorted through all of the options. Because Aaron\u2019s 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.<\/p>\n 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\u2019s health. \u201cOur team really did their homework,\u201d Taryn said. \u201cWe said, \u2018Just do whatever you need to do.\u2019 We were the \u2018Yes\u2019 parents.\u201d<\/p>\n Taryn explained that the infections came so often that they were always ready to take Aaron to the hospital. \u201cWe 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\u2019d be going back.\u201d<\/p>\n 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. \u201cWhen 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\u2019t eat to do that \u2013 it was incredible.\u201d<\/p>\n The search for a miracle<\/em><\/strong><\/p>\n At age three, when Aaron endured a third, almost fatal attack of Septicaemia, his doctors decided to undergo a bone marrow transplant.<\/p>\n \u201cIt was very clear to all of us that we had no choice but to embark on a transplant,\u201d Dr. Smith explained. \u201cThe 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.\u201d Before his transplant, Aaron\u2019s parents had spent over R250 000 on formula alone.<\/p>\n 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. \u201cIt wasn\u2019t taken lightly,\u201d Dr. Smith said, \u201cAnd it wasn\u2019t just us. It was a wider international community of specialists who guided us and said this really is the only way forward.\u201d<\/p>\n 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\u2019s 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\u2019s day school and faith community. Dr. Smith called the SABMR \u201cextraordinary\u201d in its pursuit of a donor for Aaron.<\/p>\n Aaron\u2019s parents also started a fundraising campaign on BackaBuddy.co.za, which became the site\u2019s highest grossing fundraiser for an individual ever at over R1,5 million from almost one thousand donors.<\/p>\n 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\u2019s pre-primary school, helped organise a challah bake with the school\u2019s Parent Teachers Association. \u201cFriends came, parents of friends came, friends of friends came,\u201d Cheryl said. Even Dr. Smith was in attendance.<\/p>\n Taryn credits the incredible community response to her son\u2019s nature. \u201cHis story, it\u2019s so inspiring. Despite what he\u2019s gone through, he\u2019s very positive and happy and lives life to the full. I think people resonate with that. There\u2019s no medical reason that he should be here, so I really do think it was the power of the community\u2019s prayer and efforts. There were prayer groups every day.\u201d<\/p>\n Aaron\u2019s miracle donor was finally found in 2018.<\/p>\n The transplant goes awry <\/em><\/strong><\/p>\n In August 2018, Aaron received his bone marrow transplant. As Taryn would say later, the transplant saved his life \u2013 but he almost died in the process.<\/p>\n 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, \u201call hell broke loose\u201d.<\/p>\n About a week after the transplant, Aaron had an extremely rare reaction to the transplant called a \u2018Cytokine Storm\u2019. 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\u2019s 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.<\/p>\n On top of this reaction, the transplant physicians also found Adenovirus in Aaron\u2019s lungs during the transplant. Dr. Smith explained that if a patient gets Adenovirus in their bloodstream after a transplant, it\u2019s a 100% mortality rate. After the transplant, Aaron\u2019s family had to wait three days to find out if it had reached his bloodstream.<\/p>\n \u201cIt was the most horrific three days.\u201d Taryn remembers. \u201cWe were prepared for the worst. There were people lining the corridors of the ICU praying for him.\u201d<\/p>\n 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\u2019s friends and family had lined up games and toys to play with after the transplant, but he was often so sick he couldn\u2019t play with any of it.<\/p>\n \u201cTry putting a three-and-a-half-year-old in a room for three months,\u201d Taryn said. \u201cEspecially one that\u2019s sick, some days so sick he couldn\u2019t even watch Paw Patrol. One day his face was so swollen that his eyes were swollen shut. Imagine!\u201d<\/p>\n Taryn recounts that month in the ICU, saying the family was in \u201cflat-out survival mode\u201d. She took several months off work to be in the hospital almost full time.<\/p>\n \u201cWe were in full suits, masks, gowns all the time. Twelve hours a day, Aaron\u2019s grandmother and I were at the hospital while Steven was at work. When he came back, we would go to sleep.\u201d Taryn recounted one or two traumatic drives to the hospital after receiving distressing phone calls from Aaron\u2019s doctors. During one phone call, Dr. Smith was crying.<\/p>\n Despite the horrific days that followed, Taryn still believes the transplant was the right call. \u201cIt was always an experiment,\u201d Taryn said. \u201cNo one could have predicted what happened.\u201d<\/p>\n No matter what Aaron faced, Taryn truly believed her child would live. \u201cI 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.\u201d<\/p>\n But he did. Less than four months after his transplant, Aaron was allowed to go home. He left the hospital in a wheelchair \u2013 but with a huge smile on his face!<\/p>\n Moving forward \u2013 and getting stronger every year<\/em><\/strong><\/p>\n That smile of Aaron\u2019s is all over Taryn\u2019s phone camera roll. He\u2019s smiling in every single photo, even the ones in the hospital. The array of pictures \u2013 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 \u2013 reflect the Lipschitz family\u2019s complicated reality: trying to give an extremely sick child a chance at a normal life.<\/p>\n Thankfully, since his recovery, Aaron\u2019s time at the hospital has dropped significantly and his doctors have seen a major improvement in his body\u2019s ability to fight infections. The transplant was successful in rebooting his immune system to a certain degree and he\u2019s 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\u2019s already tolerating things he couldn\u2019t 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\u2019s also in play therapy and physiotherapy.<\/p>\n 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.<\/p>\n There are still some fears. Taryn talked about one scare when a classmate of Aaron\u2019s came down with the chicken pox. Because of Aaron\u2019s condition, even a mild chicken pox infection could spread to his brain, which may kill him. \u201cThankfully it wasn\u2019t chicken pox,\u201d Taryn said, relieved. \u201cBut it\u2019s things like that, he could die.\u201d<\/p>\n \u201cWe risk his life every day sending him to school, we know that,\u201d Taryn explained. \u201cBut you\u2019ll see it when you meet him \u2013 you just can\u2019t keep Aaron at home.\u201d<\/p>\n Principal Lazarus commended Taryn and Steven for giving Aaron a real childhood despite his illnesses. \u201cThey could have kept him at home,\u201d she said, \u201cbut there wouldn\u2019t 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.\u201d<\/p>\n Despite the fact that he can\u2019t eat, Aaron has chosen to be a part of eating times at his school. Taryn says that instead of food, he\u2019ll drink water, chew on ice, or even lick a piece of fruit to experience the taste. \u201cHe\u2019s so social, he just wants to be a part of it. He didn\u2019t want to go out into the hallway while the other kids were eating.\u201d At birthday parties, he focuses on the games being played rather than the food table. \u201cThat\u2019s just his normal,\u201d Taryn said.<\/p>\n Dr. Smith credits Aaron\u2019s parents for his astonishing recovery. \u201cThere 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.\u201d<\/p>\n For Taryn, Aaron\u2019s medical team deserves the credit. \u201cThere was no ego, no who\u2019s right, who\u2019s wrong. It was just, \u2018Let\u2019s save this child,\u2019\u201d she said.<\/p>\n At just six years old, Aaron has already touched a lot of lives. \u201cI have learned a lot from Aaron medically but also just being a human,\u201d Dr. Smith said. When he retired last year, Dr. Smith said the hardest part was having to tell Aaron and his family. \u201cI feel like a grandfather to Aaron now. It\u2019s so hard not to, after seeing him almost every day for so many years.\u201d<\/p>\n But it wasn\u2019t just the people Aaron directly interacted with that were affected by him. Dr. Smith said, \u201cEven the genetics team who did his sequencing, who had never even met him\u2026 when he was in the Cytokine Storm and we weren\u2019t 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.\u201d<\/p>\n Through every challenge, Aaron\u2019s community has been amazed by his resilience. \u201cOne thing is clear to me,\u201d Dr. Smith noted. \u201cAaron is going to survive. Look at the conditions he\u2019s had, but he\u2019s pulled through. He has survival stamped all over him. He\u2019s destined for great things, so we\u2019ve got to keep him alive!\u201d<\/p>\n Aaron became a big brother on 27 September 2021, when Taryn gave birth to a healthy baby girl.<\/p>\n Aaron\u2019s miracle donor<\/em><\/strong><\/p>\n Now that the obligatory three-year confidentiality period has passed, the Lipschitz family has begun the process of meeting Aaron\u2019s bone marrow donor. The family has already sent his donor a letter, thanking her for saving Aaron\u2019s life. \u201cIt took us a year just to write that letter,\u201d Taryn said. \u201cBecause what do you say to a stranger who did that for your child?\u201d<\/p>\n Dr. Smith believes that everyone has the capacity to give such an extraordinary gift, especially when they know a life like Aaron\u2019s may be on the line. \u201cOrdinary people can do remarkable things,\u201d he said. \u201cAaron just brings that out of people.\u201d<\/p>\n Could you be a donor for a child like Aaron? <\/em><\/strong><\/p>\n 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\u2019s 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<\/a>, call (021) 447-8638, or email donors@sabmr.co.za<\/a>.<\/p>\n