Little Leo Parker is fighting a most rare fight at only 8 months old with a genetic disorder of which there are only just over 20 known cases in the world. The good news is that he can be cured should he find the correct donor (who might just be reading this right now).
Cape Town, South Africa (03 March 2025) — Little Leo Parker is fighting a most rare fight.
At just 8-months-old, Leo has already seen more medical specialists than most will see in a lifetime. Blood tests, transfusions, x-rays and procedures in abundance; for the little boy, these have all already been recurring characters in his life and his introduction to the world.
Leo has MECOM-associated syndrome. If you haven’t heard of it, that’s because it’s extremely rare. So rare that the geneticist Leo’s parents took him to hadn’t heard of it. It is so rare that there are only an estimated 23 known cases in the world, including Leo.
Leo’s parents share that the disorder causes complete bone marrow failure. To explain what the disorder impacts in simple terms, his mom, Tarryn Parker (a doctor herself), broke things down in the same way that she did to help her older son understand.
Essentially, Leo’s ‘bone factory’ (which produces the cells his blood needs) is defective. As such, the ‘factory’s’ parts are not working correctly, and the cells needed are not being produced.
As such, Leo’s bone marrow is no longer producing red (oxygen-carrying) and white blood cells (infection fighting) or platelets (which help wounds heal and bleeding stop).
“He is reliant on regular blood transfusions to prevent him from having a life-threatening bleed and is at constant risk of severe infection,” his parents explain.
The good news is that Leo can be cured. The hard news is, this is entirely dependent on finding the correct donor match.
“Leo’s only chance for survival is a bone marrow transplant,” his parents share, adding that 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.”
The Mighty Mack army has come together to stand behind the Parkers in their search for a match.
Like Leo’s parents, they are urging everyone who can to register as a bone marrow donor with DKMS and give Leo the chance at life.
Registering
Registering is nowhere near as complicated or time-consuming as one might assume. Good Things Guy’s Tyler has shared her own experience (which you can find here) for those who are curious about this initial step.
If you are between the ages of 18 – 55 and in general good health, you can request a swab kit at dkms-africa.org.
The Process
If you are a match, DKMS will contact you to begin the next steps. This includes a health check (where it’ll be confirmed whether you are the best match), followed by a peripheral blood stem cell donation (this is not a surgery) and then the bone marrow donation, which is a different procedure. You can find out more here.
The more people who register, the more the odds lean in Leo’s favour.
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