With a little help from my friends
This is a fundraising page for Aaron, Arizona and Joshua, three young kids with critical illnesses.
Aaron Lipschitz (age 4) is the only child in South Africa to be diagnosed with Interleukin-12 Receptor Defect. In simple terms the cells in Aaron’s immune system do not communicate effectively and as a result he is unable to fight infections. Aaron has also never been able to any tolerate food without becoming very ill. The only nutrition he has been able to cope with is an extremely hypoallergenic formula called Neocate. He is currently fed via a MIC-KEY feeding port in his stomach. There is no cure for Interleukin-12 Receptor Defect and Aaron’s only hope of overcoming his recurrent infections and surviving was to have a bone marrow transplant. We were very fortunate that The South African Bone Marrow Registry found Aaron a 10 out of 10 bone marrow match overseas.
Aaron had his bone marrow transplant in August 2018. We 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. It was a miracle that Aaron survived his bone marrow transplant. 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 we would have liked.
Aaron has had to go back on 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 change yet in Aaron’s ability to tolerate food. His medical team now believes that there may be a second diagnosis responsible for the food allergy component of Aaron’s condition. They are currently mapping his entire genome overseas to try and determine what this second diagnosis could be. Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead.
Joshua Nel (age 15) was halfway through his first year in high school, enjoying playing the cello, karate, and other school activitites, when he started complaining of headaches. After having eliminated possible causes such as growth spurts, school stress and dehydration, the family went to the doctor for a full assessment. Sinus medication offered no relief; Joshua was also beginning to feel lethargic, which was put down to exhaustion. After a trip to the chiropractor, to make sure the headaches were not spinal-related, he was urged to have his eyes checked again. The optician immediately booked Josh to see an opthalmologist, who ordered an MRI. On 6 November 2018 the neurologists walked into the hospital room to tell the family that Joshua had a brain tumour.
Surgery was initially performed to divert the cerebral fluid blocking one of his ventricles, and Josh proudly showed off his scar to anyone willing to look at it. On Tuesday 20th November 2018 the theatre was cleared for the whole day to perform the most complicated brain surgery. When he woke up, he couldn't move, speak, eat or even remember what had happened in the last five minutes. He had Posterior Fossa Syndrome and the pathology report indicated that Joshua’s tumour was a malignant Grade IV Pineoblastoma. Unfortunately the surgeon could only remove a small portion of the mass due to the balance calcifying on his brain stem, so the family was instructed to go for a consultation at a hospital which specialises in academic oncology research. The very last thing the family wanted was for Joshua to be incapacitated by the cruelty of radiation and chemotherapy. The Alternative Healing Centre presented itself to the family. The pure love and commitment to Josh and his fight going forward brought tears of relief. He was not treated as a science experiment, but as the fighter he is, a beautiful, positive soul.
Arizona Mia Hoy (age 4) has recently been diagnosed with stage IV High Risk Neuroblastoma, a type of cancer which only affects around 100 children under five per year in South Africa. High risk patients have a 60% chance of relapse with no known cure for relapse Neuroblastoma. Despite unfavourable statistics, Arizona has begun intensive chemotherapy at Red Cross War Memorial Hospital in Cape Town, in the hopes of seeing a reduction in the size and spread of the tumours. With additional supplements, special diet requirements and monthly expenses that still need to be covered, finances are tough for the family. Arizona is a joyful and bubbly little girl who loves unicorns and the colour pink. She stole everyone’s hearts when 120 tow-trucks and service vehicles formed a procession from Diep River to Kommetjie to raise awareness of her plight, and to raise funds. She has just completed four intense chemotherapy cycles and her recent MRI & CT results show a significant improvement, bringing much hope to the family.