Coping with Ollier's....

I'm sitting with my music tonight and I'm thinking of Mackenzie. Sus noticed that her finger tumors are looking like they've increased in size again. She has doctors appointments this week... I'm still waiting on word about those... in the mean time, we pray.

I do not have Ollier's myself. I haven't dealt with this disease on the day to day basis except for this blog. As the blog is gaining popularity, the emails are starting to trickle in, both from parents of children with Ollier's disease and adult patients facing this diagnosis. I read emails and fb messages talking about surgery, after surgery and multiple complications... life spent recovering from surgery and illness. Long drawn out recoveries, with lots of unknowns and very little information and seemingly, very little hope...

Last holiday season, Mackenzie was a normal, healthy little girl with her future gleaming bright and uncomplicated before her. This holiday season Mackenzie is preparing to begin her fight, as Susanne and I begin to rally and get the very first nonprofit organization for Ollier's Disease up and running.  Life can change in an instant. And sometimes those changes are hard hitting and a heavy load to carry. No one should have to carry this alone. This blog is a place of support and connection for patients and their families, the roots for our nonprofit.... Get involved, donate, share your story and lets give the gift of hope this year, in honor of sweet Mackenzie and all of the others.

Emily's Story....

Thank you so much to Emily's mom, Carrie, for sharing Emily's story... And I will be sure to pass your message on to Mackenzie's mom.


I Just came upon your blog today and thought I'd write you a quick note. My daughter, Emily, was diagnosed with Ollier's Disease when she was 3, she is now almost 15. I know what Mackenzie's family is going through right now and how scary it is to have a disease that very little is know about. Emily has been through 10 surgeries, 2 of which were to lengthen her left femur. The lengthening surgeries are very difficult. It has now been almost 3 years since the last surgery so we are in a good place. Despite it all, Emily is one of the happiest, most well adjusted teenager you'd ever meet. We live in San Jose, I saw that Mackenzie is in Sacramento.


As always,
Thank you for your support.

Team Mackenzie =)