TheRaceForGrace.com

Hopkinton Police Department  VS  The Ashaway Fire Department

 May 19th at Chariho High School  10 AM

$3.00 per person–All proceeds go to RSRF in honor of the RACE FOR GRACE!!

Come see Grace’s Grandfather, retired Leutinent of the Providence Fire Department throw the first pitch and listen to Greg Carello the honorary God Father sportscast the exciting event.   

Dear Sam

Thank you for your letter which was beautifully written.  Our work does give some hope that one day it may be possible to cure Rett Syndrome, but we don’t know how long this is going to take.  Many scientists are now working to make a cure.  Like you, I really hope they find something that works before too long.

With best wishes.

Adrian Bird

The Race for Grace, as you know is just exploding before our eyes.  We get calls/emails everyday from people with more donations, more teams, and businesses that are willing to help.  It is truly an amazing experience.  My dear friend Kelly has contacted all the state officers (Lt. Gov, Treasurer, Sec. State, A.G., Congressman Langevin) who have RSVP’d Yes to attending the race.  She has received preliminary word that the governor is expected to attend.  This news has just confirmed how successful this event is going to be and what a tremendous impact Grace has had on people’s lives near and far.  As Kelly has said many times, “There’s just something about Grace” and there certainly is. 
Speaking of something about Grace.  At Christmas, we received a check in the mail from a financial institution in Newport where David’s cousin works.  She had presented our family situation as consideration for a “dress-down day” collection and they accepted her request.  The employees of the business gave money towards our family and we received a very generous check with a letter wishing us well in our situation. 
I wrote a letter of great thanks with some pictures of Grace on the letter and sent it to David’s cousin at the bank.  Around the same time as the collection, the manager of the institution had announced to his family that he would not be giving Christmas gifts this year and instead wanted to send a family away to the family house on North Captiva Island, Florida.  He had a “feeling” that it was going to be a little girl but didn’t know who she was.  Well, when he happened to see a copy of the letter which had been scanned and sent to all employees, he “recognized” Grace as the one.  He knew nothing about the dress down day collection or the connection with one of his employees he just knew that this little girl was the one he was meant to send on a trip with her family. 
I don’t know how shocked he was to learn that there was seven of us but it didn’t stop him from contacting us and subsequently booking our tickets.  We just received confirmation of our flight and we will be leaving on May 13th- Mother’s Day for one week!!  What a truly divine gift.  We completely recognize that this gift is from God and we are so blessed to receive such an incredible trip.  Back when Grace was diagnosed, I felt certain and told David that we were going to go on a wonderful vacation together before the summer.  I didn’t know how I knew that, I just felt it.  When “Make-a-Wish” came to our house before any of this transpired, I told them the only thing I could imagine that would be specifically for Grace would be a vacation at a beach-front house.  I guess my “wish” was a little non-specific in terms of place, details, etc. so we/they didn’t pursue it.  I thought my feelings were “off” so I put the idea out of my head.  Then we got the call from David’s cousin about her boss.  It was incredible.  It is a dream vacation that we would never have the means to experience on our own. 
A couple of weeks ago, David realized that he was going to need time off for the Race for Grace so he called work to see if by a long-shot the week preceding the race was available.  Someone had just cancelled out on it.  David scooped up that week.  Then the other night, after learning that our tickets had been purchased, he had to see if that week (directly preceding the race week) was available.  The likelihood was tiny however, I told him “It will all work out” and when he looked at the schedule, someone had recently cancelled out that week too!!  So we are all set.  David’s got from Mother’s Day(May 13) until May 26th (Race Day) off from work. It was all clearly meant to be. 
So there’s our fantastic news.  If you would like to see where we will be spending our dream week, visit www.margaritasbeachhome.com or www.northcaptiva.com
It’s amazing.  It is a place that is way out of our reach financially but here we are headed off there in another month!  There were a lot of things out of reach a few short months back and now they have come closer-even the idea of a cure for Rett Syndrome!!  Really, I have come to believe through direct evidence that nothing is impossible through God. 
We continue to believe without doubt that there will be a cure for Rett Syndrome.  We know that we are in God’s constant care and are so thankful for that knowledge-how comforting it is. 
We hope you enjoy reading this amazing story…Amazing Grace!!  She has taught us so much and we hope you too have grown in faith and love through Grace and her beautiful life. 
Now I have to go shopping for some funky island flip flops!!  :)  Many smiles……..
 
Tara and Family

 

Sam wrote a great letter to Dr. Adrian Bird the researcher who treated the mice.  I am mailing it to him at the University of Edinburgh.

Tara

Barbara Morse will be doing a special on Grace, Rett Sydrome and the Race for Grace on the 5:30 pm news tomorrow (Friday) evening.
We’re going to be in Boston with Grace when it airs, so we need you to watch it for us!!
-Tara

To see it go to: http://www.turnto10.com/northeast/jar/health___fitness.html
Scroll to the bottom to Health Check 10 Video Reports for a Rett Syndome report about Grace

More press articles on Grace click here 

Another quick update,
We are finally home.  Grace is on some new seizure meds so we’re hoping for success.
Now we need to get ready for the Easter Bunny! 
Race for Grace!!!!!!!!!!!!!!
-Tara

Hi everyone,
Quick updates for now…
Grace is still at Hasbro.  She may be in for another day or so but we’ve been told she’ll be home for the weekend.  EEG is “very abnormal” even on her seizure meds so they are working on things and observing her closely. She was admitted Friday night after some very scary events of stumbling and extreme behavior changes. She’s got all the leads cemented into her head again with another big gauze turban on.  She’s tolerating it pretty well. 
There continues to be a house party every night with all the Reddingtons on Hasbro 6!  And this morning, even the Easter Bunny managed to get out of bed (after working all night) and greet the school bus loaded with cheering children.  Lily was a little freaked out though!!
I’ll let you know when she’s home again. 
Thanks for the prayers,
Tara