Archive for February, 2018

February

Wednesday, February 28th, 2018

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

My friend, Maddie Bermingham

Sunday, February 25th, 2018

Maddie Bermingham was my kindred spirit… Born into the world of Lissencephaly/Miller Dieker Syndrome we were connected from the start. We never had the opportunity to meet in person but my mom would show me pictures of her, we actually favored one another! Maddie was a tough girl like me! You can’t be a Miller Dieker kid without being tough. One battle after another we have to conquer…. whether it be hospitalizations from being ill, surgeries, seizure fighting, oh the list goes on and on…Maddie fought very hard for 6.5 years. It broke my heart when I heard the news of Maddie losing her battle to a seizure. It is just so unfair. I am sorry I never got to meet you. I know your mom and dad and brothers are missing you so much. Even though you are in a much better place than we are down here you are missed and thought of daily. I see you running,jumping,singing and dancing… I am sure the angels are amazingly beautiful in person. Fly high Maddie loo….. We sure do miss you.
Love Malia