What began as a routine case of measles quickly turned into every parent’s nightmare. After suffering from a series of devastating symptoms, nine-year-old Noah Nel was diagnosed with Fanconi anaemia; a rare and life-threatening genetic blood disorder that prevents his bone marrow from producing the blood cells his body needs to survive.
His parents, Tyler Schwagele and Shane Nel, have been by his side through all the hospitals visits, blood transfusions and biopsies.
“Having received such a diagnosis that isn’t curable with medication has been one of the most disheartening things ever.
“Knowing you have to rely on the kindness of someone else to make your child healthy leaves me feeling helpless and empty. We no longer do weekends away; we be careful who we are around and make sure we don’t go near sick people,” Schwagele said.
He has had two blood transfusions, two bone marrow biopsies, platelets transfusion and dozens of medications, however according to his mother, he is responding well and displaying strong fighting spirit.
Since his diagnosis, Noah’s life has changed dramatically. He has gone from being a bubbly, dirt bike-loving boy who played rough and enjoyed Fortnite, to living in a safe, carefully protected bubble.
The best way to save Nel’s life is to receive a stem cell transplant. Robin Lewis’ initiative Matches on the Map has been working towards assisting families who have members suffering from Fanconi anaemia.
The initiative recently celebrated a success story of a local donor who successfully saved a life through stem cell donation.
“We used to say that if we could find one match throughout our entire 10-year campaign, it would be worth the effort.
“Little did we know, we would find our first match within the first year, in our home country.
“Our support group for families affected with Fanconi anaemia is growing and we are often connected with individuals needing to undergo a stem cell transplant without the means to do so, it would be a dream come true if we could somehow gain access and care for those families and we’re constantly working on building our relationships with medical professionals and transplant facilities,” Lewis said.
Bradley Peters, the successful donor, shared a realistic account of what it takes to become a donor.
“It’s a long and tedious procedure before you donate, you do multiple blood tests. I did about four tests and they extracted about 20-30 vials of blood from me to test various aspects like diseases, check my blood count, sugar levels, and so on.
“Afterwards, if you pass the blood samples test, they fly you up to their health facilities in Cape Town, where they do a full body inspection, checking for any tumors and any bodily dysfunction, which could potentially affect the patient who receives the stem cells.
“Thereafter, they test to check your mental state.
“They also perform x-rays on you, then the send you home,” Peters said.
For more information on how to register as a stem cell donor, visit www.dkms-africa.org.