LIFE 4 LEO - BE THE MATCH, SAVE A LIFE

Our brave baby boy, Leo, is in urgent need of help.

Leo has been diagnosed with MECOM-Associated Syndrome, an extremely rare genetic disorder that causes bone marrow failure. So rare that 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 span of life, Leo has seen 23 medical specialists; he has had multiple x-rays, ultrasounds, biopsies and other procedures under anaesthetic; 20 blood transfusions (and counting); as well as an unfathomably high number of blood tests and painful needle pricks.

This genetic disorder has resulted in complete bone marrow failure and Leo cannot produce red blood cells, white blood cells, or platelets. He is blood transfusion-dependent to prevent him from having a life-threatening bleed and he is at constant risk of severe infection. This is only a short-term solution and Leo’s only chance for survival is a bone marrow transplant.

Right now, there are no suitably matched donors on either the national or the international bone marrow registry. We are praying for a miracle and asking, from the bottom of our hearts, for your help in spreading Leo’s story to as many people as possible.

If you are between 17 and 35, you can register as a bone marrow donor. Swab The World offer a completely free service of delivering and collecting a DNA swab kit to your address. It's a very simple and completely painless procedure. The actual bone marrow is no longer surgically removed. It is done peripherally by simply removing, filtering and returning your blood.

Leo is simply the most wonderful, happy little soul. He is an absolute joy 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 as a matter of urgency.

Please, if you are eligible, sign up with your local registry today. And if you can’t register, we would still appreciate it if you could please share this message. The more people who see it, the greater Leo’s chances of finding a match.

Thank you for your kindness, your time, and your help in giving Leo a fighting chance.

With all our love and a great deal of hope,

Tarryn and Andrew