facebook...finally

Time is always my worst enemy...

There's always too much to do and too little time to get it done.

So, ever since our staff had set up a Facebook account for me a few years ago (during an Awareness Month fundraiser), I have been avoiding it religiously.

Today, I got a note telling me that I had "100 friends awaiting your response".

Being of a generation that gets hives when we let things lie - after a 10 minute tutorial from Debbie - I went to the page and started accepting friends.  In reading back messages, I saw the following from Sarah Peek's grandmother, Bonnie Corey

I am Sarah's grandma. I want to write for Pathlight. I always meant to when she was alive and have to now that she has passed. My youngest daughter (Sarah's aunt) is 12. They celebrated their birthdays every year. She did not know how to have a birthday this year. She turned her grief into a BBQ for their birthday where she collected a jar of "Pennies" and collected 588 dollars for PH. I still look up in the sky and sometimes Sarah is there. Hopefully myself, Aunt Emily, and Sarah's grandpa will be able to join Michelle, Dave, and Nathan at this years walk on Long Island. Hope to speak with you soon.

How could I let a note like that go unanswered since September 3? 

I'm moved and I'm sold.  My next step is to talk to Emma - like Debbie, one of PHA's social networking experts - about how I can keep a Facebook presence putting in 15 minutes a day.

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Taylor and Sarah...

Taylor and Sarah.  Two little girls on different coasts..

On June 5, 2010 the Caffrey family hosted The Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk in Anaheim Hills. Nearly 600 runners and walkers registered and many more came to show their support..

Shari and Michael had lost Taylor on September 19, 2009 at the age of  4 1/2  She had been diagnosed with PH in 2008.

Taylor - known to her team as as Coach Tay - was undoubtedly the youngest coach in the history of the Canyon Hills Soccer Association, where she participated with her sister, Brooke.

The family has created a website, TaylorsWish.org/, to keep her spirit and inspiration alive.

Yesterday, Michelle Peek called.  I hadn't seen her since I met her and her husband David and their children Sarah and Sarah's little brother, Nathan last October at the New York Walk for PH on Long Island.  I had blogged about Sarah and her family shortly after the event.

Michelle had a question to ask but when she eased into it slowly, I knew there was news.

Did you hear about Sarah?

I hadn't. She told me that Sarah had passed on March 3 at age 7. Another great sadness.  Another reminder that as fast as things are moving, they still don't move fast enough.

Syracuse Online reported on Sarah.  Thie story included Sarah's dream to ride a bike.

At Christmas, her grandparents bought her a three-wheeled bike. In a photo taken Christmas Eve, she’s standing on the pedals, smiling broadly. The straps from her backpack can be seen over her yellow Christmas pajamas.

Michelle told me she is working with their family's church which is organizing an August awareness event in Sarah's memory.  PHA will help with that in whatever ways we are asked.

Our condolences to the Caffrey and Peek families and to all who, despite terrible loss to this disease, continue to help others.  We share your sadness.  We are in awe of your strength and your humanity.