To say "thank you" isn't enough for what you are doing and the difference you are making…I will try to put into words what meeting you has meant to us, but for right now I think the appreciation and genuine affection Michaela displays in these pictures with you, is enough. --Maria, Bob, Frankie, and Denny Muraida and of course, our hero, Michaela |
Dear Rick,
When you took stance before us and began your speech at the Hemispherectomy Conference in Baltimore my heart began to dance. To think that finally someone was advocating for our children and educating the world that they are not different......they are beautiful and they are human, they have hearts and feelings and they speak a universal language.....laughter and happiness!
I had travelled to the conference from Australia with my daughter Keeley who was born with Hemimegalencephaly. A condition that had apparently never been seen before by any specialist that we had consulted. Of course, because of this, her prognosis was said to be extremely poor. She suffered in excess of 200 seizures a day and did not develop........apart from her most amazing smile and personality. At 13 months of age she underwent a complete anatomical hemispherectomy which took a gruelling 17 hours to complete. She continues to have seizures, she does not walk, finds it difficult to communicate, cannot eat orally - or at least these are the things that her specialists are so quick to point out to us.
She is 6 years old and is the absolute life of any party. She has a personality that is bigger than Ben Hur. A smile that could light up the night sky. Is funnier than any comedian that I have ever listened to. Is braver than I could ever find it in myself to be. She may only have half a brain.......but she has a full and beautiful mind. To me, she is simply perfect.
What your organisation is doing is nothing short of wonderful. I want to thank you. For seeing that beauty is not etched on the cover of an airbrushed magazine. Beauty is in the smile of a courageous young child, beauty is in the eyes of an amazing young adult who can hold their head up high for the first time in their life. Beauty is in each and every one of us. Difference is not ugly but ignorance is in the people who see our children as different.
Amanda Green