Save Aaron: Cycle Heroes raise funds for boy (5) with rare genetic condition.
Aaron Lipschitz (5) from Sea Point, Cape Town, 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.
Undergoing a Bone marrow transplant
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.
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.
Over the course of two years, the BackaBuddy campaign raised over R1 629 017.18 to support Aaron with contributions from over 978 donors both locally and abroad.
Finally in August 2018, Aaron’s family got the call they had been waiting for.
With the support of The South African Bone Marrow Registry, a 100% bone marrow match was found for Aaron overseas. At only 3 years old, Aaron underwent chemotherapy to destroy his current defective immune system before it was replaced with the donor’s bone marrow.
The risky procedure was met with complications when Aaron developed a very rare reaction to the new bone marrow, called a Cytokine Storm, which landed him in Red Cross ICU for a month. The fact that he was able to survive the transplant is a miracle, says Aaron’s mom, Taryn.
“Aaron is a fighter in the true sense of the word. His doctors were trying to prepare us for the worst and I told them to wait and see…Aaron survived against all odds.He has the most incredible zest for life and thirst for knowledge.” – says Taryn.
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 doctors would have liked. To boost his immune system, he needs to have weekly immunoglobulin treatment.
When the transplant had no significant change on Aaron’s inability to tolerate food, his medical team decided to do a whole genome sequencing to determine the root of the problem.They soon discovered a second rare genetic variant known as Fox P3, the gene responsible for the overall regulation of a person’s immune system, which may be contributing to the food allergy component of Aaron’s condition.
Doctors also believe this second diagnosis may also explain why Aaron’s immune system responded so slowly to his bone marrow transplant.
“Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead. Whenever we feel that we are getting close to the summit of this mountain,the mountain seems to become higher. All we can do is keep our heads down and keep putting one foot in front of the other.” – says Taryn.
Cycling to crowdfund
On the 8th of March, nine capetonians lead by Rebettzin Sara Wineberg, will take on the Cape Town Cycle Tour, cycling a distance of 109 km to raise funds for Aaron’s ongoing medical expenses.
- Aaron currently survives on a hypoallergenic formula administered 3-4 times a day via a MIC-KEY feeding tube in his stomach.
- He still requires weekly immunoglobulin infusions where a tiny needle is inserted under the skin in his stomach to administer the infusion.
- Aaron is in occupational therapy, physiotherapy and play therapy to help support him and allow him to lead the most normal life possible.
Meet the cyclists
Rebettzin Sara Wineberg from Sea Point, Cape Town, is excited to take on the Cape Town Cycle Tour for the second time, this year
“I 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!’ – says Sara
Taking on the Cycle Tour for the first time, highschoolers from Cape Town Torah High School, Yehuda Hecht (16), Nissim Brett (15) and Joseph Meltzer (15) are enthusiastic to support Aaron’s treatment and make a positive difference. They will also be joined by Rabbi Pinni Hecht, Elenor Miller, Ronit Netter, Terry Deats and Aliyah Kaimowitz.
“We are so fortunate that along this very challenging trail we have many angels helping us 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.” – says Taryn
Ahead of the Cycle Tour this Sunday, the ‘Riding for Aaron’ campaign has already raised a total of R94 699.18 towards the fundraising target of R120 000 with contributions from 128 donors.
Support Aaron’s treatment on BackaBuddy, by making a donation here:
Follow Aaron’s journey on Facebook: https://www.facebook.com/save.aaron.12
Encouraging new bone marrow donors
The Lipschitz family would like to encourage all South Africans, to register as bone marrow donors to give children like Aaron a second chance at life.
To date, the SABMR has helped save the lives of nearly 500 patients with life-threatening blood disorders by matching them with healthy, unrelated bone marrow donors from South Africa and the rest of the world.
According to SABMR, Sustainability Portfolio Manager, Kamiel Singh, there are currently only 74 000 donors registered on the site to cater to over 57 million South Africans.
“We are urging people to go onto the SABMR website to register as a bone marrow/stem cell donor. The process is as simple as making a phone call, filling out a form and having a mouth swab taken. You could save Aaron or another person waiting for their miracle.” – says Taryn
Register to become a bone marrow donor with the SABMR [click here]
Create your own crowdfunding campaign on BackaBuddy:
BackaBuddy has supported more than 10 000+ individuals and charities in setting up crowdfunding campaigns for medical fees, tuition and various other causes in South Africa.
- Raise funds for an individual or cause.
- Register your non-profit organisation.
- Create a crowdfunding campaign to fundraise for a non-profit organisation.
For more information email firstname.lastname@example.org.
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