Baldwinsville, Ny
USA

315-802-8202

THE PURPOSE OF MY BLOG IS TO FIND OTHERS OUT THERE SIMILAR TO OUR DAUGHTER'S CONDITION.  TO HAVE OUR STORY BE HEARD AND SPREAD AROUND. TO GET GUIDANCE, MEET NEW PEOPLE, A VIRTUAL COMMUNITY OF HOPE! WE'RE HOLDING ON TO THE POSSIBILITIES! LET YOUR VOICES BE HEARD. EVEN IF IT'S JUST A HELLO 

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A Mother's Journey * Ezra Monet Mi Milagro

I want to inspire people, I want to teach and help others simply to understand the "unknown" and not to judge or be afraid... 

Ezra means help, and Monet is our daughter's middle name and means to be heard. Mi Milagro simply means my miracle. My journey is going to cover just what it says, how I got to where I am now, and how I became we, and we became family! Hannah is our daughter, and Kristin is my wife, they will be the most mentioned on my site! They are my strength!

she was fierce, she was strong, she wasn’t simple, she was crazy and sometimes she barely slept. she always had something to say and that was ok. and when she was down, she got right back up. she was a beast in her own ways, but one idea described her best. she was unstoppable and she took anything she wanted with a smile."                 R. M. Drake

 

 

The option to Donate to Scar9 and Genetics Helping us help Hannah with Quality of life and find answers click to read more
Our story was featured in the Washington Post 2/16/16

Our story was featured in the Washington Post 2/16/16

Our Daughter is Case 1 in the entire world with her own UniQue case of SCAR9 and it's our fighting mission to find more, and promote awareness along the way! Have anything to offer us, or just want to reach out and say hello, or have a question? No question is too silly, trust me I have had my share too... click on the box above and I will be sure to get back in touch with you! 

I'm a mother who's on a journey to connect with others with Rare Genetic Disorders. To advocate and promote awareness. Scar9 and Autism is our life! Our daughter is case 1 in the world with her own UniQue case of SCAR9 and it's our mission to find more, and promote awareness!