26/02/2025
LIFE 4 LEO - BE THE MATCH, SAVE A LIFE
Please help little Leo who reminds us so much of Mack:
Leo has been diagnosed with MECOM-Associated Syndrome, an extremely rare genetic disorder that causes complete bone marrow failure. There are an estimated 23 known cases worldwide. Leo is the first in South Africa; his specific mutation has never been seen before.
In his short life, Leo has seen 23 medical specialists; has had multiple x-rays, ultrasounds, biopsies, procedures under anaesthetic, 14 blood transfusions (the need for more is ongoing) and an unfathomably high number of blood tests and painful needle pricks.
Leo’s bone marrow can no longer produce red and white blood cells, or platelets. He is reliant on regular blood transfusions to prevent him from having a life-threatening bleed and is at constant risk of severe infection. This is only a temporary fix and Leo’s only chance for survival is a bone marrow transplant.
There are currently no suitably matched donors on any national or international registries. This journey has been devastating and heartbreaking and we are pleading for your help. Leos parents are praying for a miracle and hoping for your support in spreading Leo’s story as far as possible.
If you are between 17 and 55, please register as a bone marrow donor with DKMS. They offer a free service, delivering and collecting a DNA swab kit at your address. It’s simple and painless; Matched donor stem cells are collected by removing, filtering and returning your blood.
Leo is a wonderful, happy little soul with a contagious smile that warms the hearts of all who meet him. Please help us to help him. He’s holding on, but he needs a donor urgently.
If you are eligible, register today, with DKMS or any bone marrow registry in your country and please share this message. The more people who see it, the greater his chances of finding a match.
Thank you for giving Leo a fighting chance.