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 

A Mother's Journey~Ezra Monet

National Rare Disease Day is Saturday, and ....

Christina Manning

Well as National Rare Disease Day soon approaches, I wanted to add a couple things. On Saturday, Channel 9 News has taken the interest in coming to our home to interview our family and air our story on Hannah's Ultra Rare Genetic Disorder in honor of National Rare Disease Day, and will air at 6pm! This is a wonderful opportunity for a chance for our story to get out there! We feel so very humbled by this, and so very blessed. I feel that finally one door is finally opening a crack. Some reason though I still feel as If I am still breathing with an oxygen mask on, and I am not sleeping at all! I am so overly exhausted, and I literately feel my body shaking inside during the day, and most days my face, and even my hand get this numbing sensation in them, and it drives me nuts, and I'm always cold. My mind always feels as if a million tabs are always left open, and my brain "stopped responding".    

 Remember how contagious a simple smile can be! Hannah created a smile day because it is simply her favorite thing to do! Share it on, and remember don't forget to smile WITH YOUR TEETH!   Hannah is always happy, and always smiling, and telling everyone to smile with your teeth, she wanted me to video her making a video of her creating a national Hannah smile day!!