February

February 28th World Rare Disease Day!

A day to bring awareness about rare diseases… Did you know that there are more than 7000 rare disease types and that 80% are caused by faulty genes? My Lissencephaly/Miller Dieker Syndrome was caused by a de novo mutation not by faulty genes from my parents. My chance to have another brother or sister with Liss/MDS would have been one in a million. My parents tried to give me another brother or sister but they were unsuccessful the second time around! They told me I was conceived in three months once they started trying but they’ve been trying for years now with no luck. They get to spend all their time and attention on me! 🙂

It is important to keep reminding and bringing awareness about Rare Disease Day! Educate and Investigate. Thanks for all my supporters out there rooting for me.
Love Malia

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