Among the thousands of cyclists who tackled the world’s longest timed cycle race on Sunday March 8 were those cycling for a cause.
Rebettzin Sara Wineberg, Rabbi Pinni Hecht, Yehuda Hecht, Elenor Miller, Joseph Meltzer, Nissim Brett, Ronit Netter, Sara Wineberg, Terry Deats, Aliyah Kaimowitz took on the Cape Town Cycle Tour, cycling a distance of 109 km to raise funds for a child suffering from a rare genetic condition that affects the immune system.
Five-year-old Aaron Lipschitz from Sea Point, is the first child in South Africa to be diagnosed with Interleukin-12 Receptor Defect, a rare genetic condition that affects the immune system.
Of the few known cases worldwide, Aaron is the only child who is unable to tolerate any food without becoming very ill. The only nutrition he has been able to cope with is a hypoallergenic formula called Similac Alimentum. He is currently fed via a MIC-KEY feeding port in his stomach.
As there is currently no cure for Aaron’s condition, the only way for him to overcome his recurrent infections and survive this condition, was to have a bone marrow transplant. The South African Bone Marrow Registry found Aaron a 10 out of 10 bone marrow match overseas.
To help cover the costs of finding an international bone marrow donor, as well as assist his family with his ongoing medical expenses, a campaign was created on donations based crowdfunding platform, BackaBuddy. So far they’ve managed to raise over R128 000, exceeding their target of R120 000.
Aaron had his bone marrow transplant in August 2018 but his parents knew that it would be a very risky procedure as Aaron had to undergo chemotherapy to destroy his current immune system and essentially give him a new immune system. During the bone marrow transplant Aaron had a very rare reaction to the new bone marrow, called a Cytokine Storm, which landed him in Red Cross ICU for a month.
Since the bone marrow transplant Aaron seems to be getting fewer infections but unfortunately his immune system has not reconstituted as well or as quickly as they would have liked. He went back and had immunoglobulin treatment weekly in the hospital to boost his immune system and help fight future infections. Aaron’s medical team was always unsure if this bone marrow transplant would help Aaron eat. Unfortunately there has been no significant change yet in Aaron’s ability to tolerate food.
After his bone marrow transplant his medical team decided to do whole genome sequencing on Aaron and discovered that there is a second diagnosis responsible for the food allergy component of Aaron’s condition. Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead.
Sara Wineberg said she met Aaron when he was in the ICU just after his bone marrow transplant. “Things were not looking good and I came together with a group of women to pray for him. I have witnessed the miracle that is Aaron, he is our miracle and I want to help see more miracles come through for him and his family,” she said.
Aaron’s mother, Taryn Lipschitz, said they are fortunate that along this very challenging trail, they have many angels helping them carry this load.
“It’s been a relief to restart Aaron’s BackaBuddy campaign. Aaron still has a very long and challenging journey ahead. The years of high medical costs have really taken a financial toll on our family,”she said.
Support Aaron’s treatment on BackaBuddy, by making a donation here: https://www.backabuddy.co.za/riding-for-aaron Follow Aaron’s journey on Facebook: https://www.facebook.com/save.aaron.12