Dear Grace Fans,
Fr. Taillon, pastor of St. Thomas More will be leading the candle-lit Rosary for Grace on Friday May 27th at 8pm at St. Veronica Chapel parking lot (home of Race for Grace) on Boston Neck Road in Narragansett.
Please come and share a short evening of Rosary and song for Grace and your intentions. You will receive many graces if you come.
Please forward to anyone who may be interested or in need of attending. Thank you.
God Bless,
Tara
Dear Grace Fans,
First of all, thank you for increase in prayers for Grace and please don’t stop yet! This winter has been a long one for Grace and my family. Her recent hospitalization yielded some interesting finds but not a whole lot of what to do for her information. In viewing her brain activity, it was observed that every time Grace moves, her movements (even slight) causes immediate electrical activity in the brain- like an epileptic discharge. These continuous discharges seem to “back up” in Grace’s brain leading to a full out overload and an explosion of screaming, torment and misery. This cycle does not occur in “normal” brains nor with most girls with Rett Syndrome. It is unique to Grace.
Grace has always had unusual physical strength and ability for a girl with her diagnosis. It is because of this strength and ability that she suffers. Her brain is not capable of “driving” her body, therefore, sadly, her body drives her brain and the process for Grace is exhausting, painful and perpetual.
What do we do about it? Well, a cure would be nice but in the meantime, we are continuing to work to understand how we can introduce new meds, change her life and manage her days better in order for her to be comfortable. This is no small task and it’s been 4-1/2 years of searching for a way to help her but we are not giving up.
Speaking of a cure… It is still reachable. Although there is no Strollathon this year (thank God!!), the Race for Grace is still an open fund and desperately in need of donations. Research is continuing and it is aggressive. Rett specialists all over, including Grace’s doctor have conviction that it’s not a matter of IF the cure will be found, it’s a matter of WHEN.
On Sunday, May 15th, the Hopkinton Police Department and Ashaway Fire Department is hosting their 5th annual Race for Grace Softball Game at Dow Field on Rt. 3 in Hope Valley, RI. There is a steak fry to follow at the fire station at 2 pm. This is all an effort to raise funds and awareness for Grace. It is really one of the only Race for Grace fundraisers going on at this time. In lieu of attending the strollathon this year, I am asking that you consider attending the game/steak fry or at least donating if at all possible to the Race for Grace.
Also, the eve of the “would be” Race for Grace this year, on May 27th, there will be a live, luminary (candle lit) Rosary at 8pm in the same parking lot of the Race for Grace. This event is not a fund-raiser, but a true faith raiser and it is called: “grace for Grace”.
I hope that this email finds you well and feeling blessed.
Please continue to keep Grace in your thoughts and prayers as she battles through each day.
Peace,
Tara