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

Today marks a year since SCAR9 complicated our world

Christina Manning

Where do I even begin. Trying to find the words seems almost impossible. I'm usually never speechless!! How far have we come in a year? I can start there I guess.  Well, let me think a moment...  Hannah has definitely had her ups and downs,  As well as we! She has been in the hospital quite a few times. Family has drawn closer, and then some family has chosen to walk away. 

I have met some incredible people along my journey of reaching out to the virtual world of support. I have also learned alot along the way, some things I have learned has actually angered me more now than the first day of diagnosis. Hannah has definitely progressed in her disease since day 1. Right now I would say is the hardest to watch.  It's heart wrenching. Knowing your child is suffering and you're hands are absolutely tied. Knowing there's no cure sucks. I'm emotionally, and physically exhausted. I won't give up the fight though. My wife and I will continue to do everything in our power to make Hannah's world as bright, and happy, and fun as can be! I wish I could be inside her head to know what she was thinking. I wish I could take the misery away. If I could trade with her I would in a heart beat! I don't understand why any child has to suffer, ever! I don't feel like we have gotten any further with getting the word out, and getting our story heard. But I'm not giving up! I need the media or someone to hear Hannah's voice. To know how much we are struggling, and how rare this is, and how alone we are. The fact that she is Case 1 in the world! Someone, somewhere has to care about that...  It has to mean something.  my mind is so fuzzy and discombobulated right now, I think this is where I will end this blog...