Chi-Nelri Smith was diagnosed at the age of 2 with Homozygous Familial Hypercholesterolaemia – when you inherit two copies of a gene that isn’t working right, one from each of your parents. Normally, the liver removes extra LDL cholesterol from the blood using particles called LDL receptors. These receptors attach to LDL cholesterol and play a key role in keeping your cholesterol levels under control. When you have this disease, the faulty gene keeps the LDL receptors from working right. Your cholesterol levels get high.
Her Cholesterol count was 27. All her tests were done in Belgium and they received the DNA tests which confirmed that she had the “double dose” of two Afrikaner-2 mutations. The 2 sets of numbers. The common name is the Afrikaner 2 – a local mutation, which is known to have a greater incidence of heart disease in unmanaged patients.
After she had a cardiac arrest at the age of 2, the only option was a liver transplant for her to survive. Chi-Nelri was listed in January 2019 and by 9 April there was still no cadaveric donor due to a shortage of organs in South Africa. Family members volunteered and started with tests to see if anyone was a compatible match, and an Angel was sent in the form of Chi-Neiri’s aunt, who was a match.
Chi-Nelri had a living liver donar. If she did not receive a liver transplant when she did, she wouldn’t have a second chance. She has an aortic valve leak because her veins started to close before the transplant, but because she received an organ, Chi-Nelri is doing much better.
“If her story can help people to realise how important organ donation is, then our mission is accomplished. Seeing how people lose their loved ones because of organ shortage is just so unfair. Why wouldn’t you want to be a hero? Be a hero… Be an Organ Donor. “
Chi-Nelri still needs tests done on an ad-hoc basis, but the medical aid doesn’t cover everything. Please help us to raise funds to cover her upcoming blood tests, doctors appointments, medical bills and outstanding accounts. Together we can change the world, one bracelet at a time!
Update 10 June 2020: Chi-Nelri’s latest results look very good, the Doctor is very pleased with her progress. Her liver functions are 100% at the moment and Doctors are deciding on treatment for her iron deficiency anemia. We pray and trust that the Neurological tests will also be positive. Furthermore, she is doing so well and we are so grateful!
Follow Bid saam vir Chi-Nelri Smith on Facebook for live updates on her progress and journey.
Fundraising for Chi-Nelri Smith
Fantasy Bracelets for Chi-Nelri; consisting of baby pink, purple, silver & turquoise wooden beads with crystals – and a Unicorn, Stars, or Daisy charm. To place an order, contact the agent in your area or shop online. Alternatively, please consider a donation; any and all donations welcome.
” A solitary fantasy can totally transform one million realities.”