Life 4 Leo

"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, and 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; 14 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. 

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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. 

Please, if you are eligible, sign up with your local registry. 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
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If you’re 18 – 35, join the stem cell donor registry. You could be the lifesaving match for Leo, or someone like him.

Leo and his family are from South Africa, but registries are linked internationally. So, by joining the Australian registry via cheek swab, you give thousands of patients across the world hope for a second chance at life. If you are ever a match for someone, donating your blood stem cells is a simple, safe procedure and we’ll be with you every step of the way.

BEGIN YOUR ENROLMENT

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What do I need to know before I sign up?

Stem cell donation is a safe and simple process that can potentially cure life-threatening diseases. Before you register, it’s important for you to have a good understanding of what it means to be a donor and ensuring you’re committed, should you be someone’s life-saving match.

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Eligibility check:

  • You’re aged 18-35.
  • Generally healthy (we’ll cover this in more detail in the next steps).
Join the registry

Signing up means:

  • You’re committing to donate to anyone, globally needing a match.
  • You’re committed to being available if called upon.
  • We’ll stay in contact, keeping you informed and ready for the call.
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Donation likelihood:

  • Matches are rare; they are based on genetic compatibility.
  • BUT while not everyone will donate, your registration increases chances for those in need.
Unique match

If you’re a match:

  • We’ll call you to let you know!
  • Donation involves a simple procedure with minimal discomfort.
  • We support you throughout, ensuring top medical care and thorough information.
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Join Leo's appeal

If you’re in Australia, register below and we’ll send a swab kit to you in the mail.

Mail kit

Outside Australia?

These links will show you how easy it is to register, no matter where you live:

Or click here to learn about your country’s registry.