Call to save Aaron and Eden, the medical mystery siblings

They say that lightning never strikes the same place twice, but one Jewish family in Cape Town is enduring its worst nightmare for the second time. Aaron Lipschitz (age 7) has faced a plethora of challenges in his young life, including undergoing a bone-marrow transplant and being unable to tolerate food due to a rare Primary Immunodeficiency (PI). He’s still primarily fed via a port in his stomach.

Now, in what was at first seen as a statistically improbable scenario, his new sister, Eden (six months old), may be facing even more extreme challenges.

Meeting the SA Jewish Report in the paediatric ward of the hospital where she spends 10 hours a day, Taryn Lipschitz explains that she and her husband, Steven, always wanted to give Aaron a sibling. Of course, they were concerned that a second child would have a similar condition to Aaron, although his exact diagnosis is still unknown. They knew he had a PI, but the subtype or variant seems not to have been documented yet worldwide. Furthermore, it doesn’t fall under the 400-plus known PIs. After extensive genetic testing, the conclusion was that Aaron’s condition was most probably a random phenomenon that didn’t have a genetic cause. Of course, this could never be 100% guaranteed, but they were confident based on all the genetic testing that Eden would be a healthy baby.

However, their daughter Eden has been in and out of hospital for half her life, and has already endured six general anaesthetics and overcome a very dangerous case of septicaemia. Aaron has also been in hospital many times over the past weeks battling a bacterial gut infection and severe abdominal migraines. The cost of a top medical aid plan for a family of four, specialised formula and medications, and a full-time carer are astronomical. Lipschitz should be with their children in hospital, but instead she is having to work to cover their costs. Bringing up a “normal” child is expensive, but with two chronically ill children, they are in need of long-term, extensive financial support.

The cause of the children’s condition is a complete mystery to the medical world. Though the family pays for a top medical aid plan, its savings have been quickly depleted and not having a formal diagnosis makes claiming from medical aid more challenging than usual. As a baby, Aaron was able to tolerate a hypoallergenic formula called Neocate LCP, but Eden hasn’t even been able to stomach this. Eden’s recent 10-week admission was due to severe pain during and after feeds. Her medical team attempted to use both a nasogastric and nasojejunal feeding tube to slow the rate of her feeds down, but this didn’t help with her severe pain and vomiting after feeds. As a last resort, her medical team had to resort to TPN (total parenteral nutrition). This is intravenous feeding via a broviac catheter through her heart to keep her alive.

TPN can be very toxic for a baby’s liver, so she is having to been weaned off it using a different hypoallergenic formula as well as continuous doses of pain medication to help her manage oral feeds again. She is on one pain medication that actually stops her brain from registering pain during feeds. Her new formula is called Novolac Aminova, and costs R450 a tin, which isn’t covered by medical aid due to her lack of formal diagnosis.

It’s been a whirlwind few months of stress and sadness. “We wanted a second child to hopefully have a normal experience this time around,” says Lipschitz. “Like other families, we wanted our biggest problem to be sleepless nights. So it has been a huge loss. Yet we all can’t imagine life without Eden.”

Steven and Taryn have committed to never leaving either of their children alone even with long hospital stays. Steven’s parents live in Johannesburg, so it’s essentially Steven, Taryn, her mom, and their amazing carer, Leonora, who are there around the clock. One of them will always sleep at the hospital. “We are like ships in the night – more like caregivers than a married couple,” says Lipschitz of her and her husband. Still, they are united in their devotion to their children.

“It’s never been [a case of] ‘Why us?,’” she says. “We know these children were sent to us to care for. I’m not angry, and I don’t have the time to cry myself to sleep. I have to sleep so I can get up and deal with what the next day brings.”

In between, there are bright moments. Aaron, who is in Grade 1 at Herzlia Weizmann, is a whiz at school and a passionate soccer player. “He’s tired of missing out. He just gets on with it. Eden adores him, and her eyes follow him wherever he goes,” says Lipschitz. “He has such empathy, and will suggest medications for her from his own experience. The other day he said, ‘Eden can have my drip stand because it’s easier to carry around.’”

At this stage, it’s too soon to tell if Eden also has a PI driving her feeding issues, or if she has severe feeding issues alone. Only time will tell how her immune system develops. The family’s worst fear is that Eden will also need a bone-marrow transplant one day. Aaron’s bone-marrow transplant in 2018 has ultimately helped his immunity, but it almost killed him in the process because it resulted in a rare cytokine storm and month-long admission to the Red Cross War Memorial Children’s Hospital intensive-care unit.

There are many unknowns. “No one knows why Aaron still needs beriglobin immune treatments weekly to support his immune system after his bone-marrow transplant. And when they grew cultures of the bacteria from Eden’s septicaemia, it was bacteria they had never seen before,” says Lipschitz. She believes Aaron’s condition may have a “spectrum”, and that Eden is on the more extreme end of the feeding issues of this spectrum.

They don’t know what the future holds and are taking things day by day. “Each of them is one infection away from becoming extremely ill,” says Lipschitz. “When Eden had septicaemia, her infection markers were 41 and they are meant to be under 0.5.” But she believes their family has always been watched over. They have experienced many miracles with Aaron, and will continue to see miracles with Eden.

“We never imagined being in this situation again but we are, and we can’t ask why, we just have to manage it as best as we can,” she says. “The community carried us through Aaron’s bone-marrow transplant in so many ways – emotionally, physically, and financially. It took us three years to ask for help from the community when Aaron was born. We’ve learnt that it wasn’t a good idea to try to manage on our own as it put our family under tremendous strain in many ways.

“As much as we would prefer not to ask for financial support, we know it’s essential. Thankfully, we haven’t needed to ask for help since 2019. We’re so blessed and grateful to be part of this community and know that help and support is available. Not everyone is in a position to help financially, but prayer and positivity are also invaluable. Every bit counts, but if people can’t give, I’m a big believer in the power of prayer,” says Lipschitz. “We’ve seen many miracles and I’m sure we’ll see more. Please continue to pray for Aharon Chaim ben Tanya and Eliyanah bat Tanya.”

• To contribute, please visit: www.backabuddy.co.za/champion/project/aaron-and-eden-medical-relief-fund.