It was brought to my attention the other day that I had set up the blog but had only addressed children with Ollier's and not adults. I have since corrected this issue... it was my understanding that Ollier's Disease is diagnosed in childhood, but since there is not a lot of information on this, I didn't find anything talking about adults being diagnosed either in adulthood, or in childhood and then battling to adulthood and through life while carrying this around. I stand corrected. =)
What I would like more than anything, is for people to share their stories or their childrens stories about being diagnosed and treated for Ollier's Disease. My goal is to share those stories to this blog, so that way, when someone googles "Ollier's Disease" they will be linked to this blog and able to see that they are not alone. This blog is public. Its been seen in 8 different countries and we are almost at 300 views... the word is spreading. People are looking. And that is exactly what I want, so please, share your story. You could help someone feel better about facing Ollier's. Your story can change someones outlook and give them strength for their journey, I don't know about anyone else, but that idea definitely appeals to me.
I spoke with Mackenzies mom this week. Mackenzie has multiple tumors on her fingers now that are growing large and are very painful. So painful that shes having trouble coloring. This is a sad turn of events for us and we are praying that she is able to get some relief in the coming months... Soon Mackenzie will be undergoing the first of a series of surgeries to remove tumors and lengthen growth plates to try and keep her body growing as well as possible. This is the beginning of a serious battle for Miss Mackenzie and her family. If you're the praying kind, offer up a prayer for strength for Kenzie's mom and recovery for Kenz. If not, positive vibes are always welcome too.
As always,
Thank You For Your Support!!!!
Team Mackenzie!!!!!
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