the story continues...

I am not even sure where to begin. I am a bit disoriented, very excited and completely humbled. Yesterday I was in a pool with 80 degree weather and tonight I am freezing as I wait for the heat in my home to rise. I returned home from the final screening at USF. The day consisted of blood work, echo gram, EKG, neurological tests and vision screening before I got the thumbs up to be involved in a 12 month clinical study. It wasn't until Dr. Z told me I was in did I feel a two hundred pound weight lift from my chest. I am so thrilled that this can be a part of my story and I have the opportunity to hear so many others story along the way.
Just like the girl at the hotel who told me a lot of stuff she is going through in life. It broke my heart. As she left my table and my mom returned with more napkins, she asked me if I had talked with her before because she was being that candid. I replied that I had just met her while we were eating breakfast. It's so apparent that we all have a story and if we happen to be so lucky to have someone listen to ours, we are blessed.

Dr. Kelly, me and Dr. Z and of course, Barkley at the final screening Monday.

I am so humbled that Dr. Z and Dr. (yea!) Kelly are part of my story. Because of them and so many others doing the hard work for a cure for FA, I have hope!

God Of My Everything

I turned the big 4-0 on New Year's Eve. And this year, surprisingly, I was looking forward to celebrating. Some of my dear friends made reservations for dinner at a restraunt I had never been and we planned to bring in the New Year at my house. My body had other plans. Instead of dinner with friends, it was a visit to the ER with another kidney stone.
Although it is still difficult to believe, everything ended well. While I was stuck with an IV and a cat scan, my friends still were able to have dinner and meet me at my house at the conclusion of the evening.
A nuisance yes but another reminder that I am not in control. My niece and nephews remind me of this. For my 40th birthday, they put together one of my favorite songs (God Of My Everything) from one of my favorite artists (Bebo Norman). Little do they know, I've been listening to this every day since my sister posted it. She recorded this as they rehearsed. The best gift ever.
Thing are falling into place as I plan the trip to Florida the end of this month. It's so great knowing He's in control of everything.

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"walking" through memory lane.

It is hard to comprehend that I am working through many of the same details that I worked through four years ago. Although some things change, most remain the same. It is almost as if I picked up where I left off. Wings Of Mercy has graciously offered to work with me again. A pilot has agreed to fly me down at the end of this month to hopefully pass the final step in the screening to be a part of this clinical study. Amazing.
It almost feels as if I am going back home. Remembering the restaurants, looking forward to seeing Kelly and Dr. Z, smelling the Florida air, traveling through the halls where I walked, being barefoot in the courtyard...a welcomed familiarity.
I am surrounded by people who are excited and support me along the way. However, I don't think these friends would be to quick to do another rousing rendition of this song.Maybe we've matured in four years...
I am so glad I got it on tape. What remains the same is my commitment, along with so many others, to find a cure for FA.
Just click here.

Happy New Year!

http://www.curefa.org/_pdf/USFrecruitmentNotice01-02-13.pdf
If your like me, you probably are asking, "what does this mean?" Well, it's the best news I've heard all year!! In 2009 I began a journey that changed the course of my life forever. Four years of waiting and living with the progression of this dumb disease, I can breathe again. There is hope!!
I am on a wild ride beginning this month, of a final screening at USF in the hopes that I will qualify for this new clinical trial down in Tampa for the next twelve months.
Plans are in the works and a tremendous amount of excitement is in the air.
As my dad so eloquently stated in a reply to my email of my intentions to be a part in the advancement of a cure for FA, "Hold on, Holly."

Cheers to 2013 and hope that researchers are that much closer to a cure!