Comments for Melorheostosis Fund

Comment on Most people sit across from their doctors to look for answers, we sit next to ours. by Sandra

Sandra — Tue, 24 Jan 2012 03:30:55 +0000

Thank you for the insight, well written

Comment on Its about time! by Sandra

Sandra — Mon, 23 Jan 2012 04:11:03 +0000

Reading your blog for my daughter, she’s 14 and was diagnosed 2010 in her right ankle. The pain was severe and caused her to stop cheer, volleyball and athletics. It’s so hard to deal with all the depression and heartache she faces. I would love for her to meet you one day at a conference if we can go. Thank you for all you are doing for this terrible condition.

Comment on What is Melorheostosis? by nibbndisom

nibbndisom — Mon, 20 Dec 2010 17:03:51 +0000

“However, only about 300 cases have been reported.”
You can see more?

Comment on Its about time! by Dee

Dee — Wed, 01 Sep 2010 16:52:00 +0000

I am feel so blessed to be able to know you and help out with this. I love fundraising! The golf tournament was amazing! I walked away feeling that this was the best group of people ever. I was so happy to help and looking forward to our next venture. Keep strong. dee dee

Comment on Its about time! by Robin

Robin — Wed, 21 Apr 2010 12:30:56 +0000

In reading your blog I only wish I knew you! You are so full of life and energy. I have melo in my right leg and there are days (like yesterday) it was all I had to walk around. And like you there are good days/bad days. It’s so frustating to have something so many know so little about. I don’t take pain meds, don’t want to be doped up all the time, I just deal. I am going to try the exercise though. I basically gave up doing everything because of the pain but maybe if I can muttle through it it may end up helping. So thanks for the encouragement
Good luck with your Golf Tournament!

Comment on Its about time! by Kathleen

Kathleen — Thu, 08 Apr 2010 16:42:02 +0000

You are an inspiration and a joy to all who know you. Your perseverance and determination bring hope to every melorheostosis patient and to every parent of a child afflicted with this debilitating disease. Thank you for who you are and all you do to help find the answers that are so desperately needed.

Comment on Its about time! by Susan

Susan — Wed, 07 Apr 2010 21:03:53 +0000

You are an amazing person, and I am proud to know you and to help get the word out! I am forwarding this site, which looks great by the way, to everyone I know!!

Comment on Its about time! by Mykel

Mykel — Fri, 19 Mar 2010 14:39:36 +0000

You truly are an inspiration to us all. I have a feeling that motivation speaking is in your future. Have a great workout, love you!!

Comment on Pain by Mom

Mom — Sat, 18 Oct 2008 22:32:03 +0000

You have always been such a modest person, not flaunting your talents and seldom ever complaining. While there can be a lot of strength of character in those qualities it can also be a lonesome place when you need support. I’m glad that you are opening up and sharing your pain with those who love you. As you know, I have lived thru my share of pain and I know personally how difficult it can be. Thought I can’t imagine how much you hurt I know it and I feel it when I think of you. I frequently get tears when I wonder about how you do it daily and what you will have to deal with in the future. Moms never want their children to hurt and I pray constantly that it won’t be so bad, or get much worse. Hopefully sharing your pain will make it a bit more tolerable when it’s so bad. When we think we are alone in something it can be so much harder to live with. I wish you would share your difficult days with me more often. I love you more than you can ever imagine and I would do ANYTHING to help you even if it’s just making you dinner or giving you one of my famous backrubs.
With all my heart—-Mom

Comment on Pain by Anonymous

Anonymous — Fri, 17 Oct 2008 23:51:30 +0000

hey stephine your my favorite coach and the best god bless you

shorti