If You Or Someone You know Has Blount's Disease, I Really Want To Hear From You! Please Email Me!

Now, there is a place to go... Now, we are no longer alone...


Wednesday, August 22, 2012

Ben Had Blounts...

Hello World! This is post is SO long overdue! Every few months over the past year, I have sat down to write to you all; and the words have not found a way out... I am here though... So here we go...

What a crazy, wonderful, insightful year it has been! BHB has a community on Facebook that it growing everyday. I am still getting emails from families all over the world on a regular basis. And, although I LOVE hearing their stories, and meeting new people; it breaks my heart that our children have to endure the heartache along side us. Everyday I read a story that inspires me; and when a parent that I have maintained contact with for a long period, finally is able to start treatment for their child, I am overjoyed.

I can still remember the feelings of horror and disbelief we felt when Ben was diagnosed with Blounts Disease. I can still see those frightening images we came across while doing our research... Although those images are still out there, now, there are images of Ben. 

I can still remember when I was such an emotional wreck, grasping, and hoping, and reaching out on message boards just trying to find ONE person who could tell me what would happen to my precious boy. What does Ben's future hold? I still have the email from the first family who found my blog; and I can still remember the relief in knowing that we were not alone on this journey.  

I can still remember staying strong, and acting normal through countless doctor visits; and x rays, and castings. When really, I was terrified. Scared that Ben would see through my smiles and tickles, and we would both fall apart.


I can also remember the first time I saw Ben walk with his feet pointed forward; and how accepting all of the kids at his preschool were; that they never, not once asked why Ben had on braces. I remember every email, every name, and every country of the people I have come in contact with.


I remember going to our beloved Dr. Deering's office last Fall. Getting Ben's x rays back and seeing that he no longer was considered "Blounts"... He no longer needed the braces we had hated to love... And now I can say, "Ben Had Blounts".


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  2. Kira you and Ben are an inspiring to keep pushing forward. I'm glad we found your blog and Facebook support group.

    1. Thank you for the support! And thank you for joining the Network on Facebook; it's a great resource!