TheRaceForGrace.com

Hi again Friends of Grace,
Today was a pretty uneventful first day home after 10 days in the hospital. Seizures are hopefully going to continue to lay low. Grace seems content to be home, although she is very wobbly when she walks around. She’s tired and drowsy and looks like a little panda bear with dark circles under her eyes, but the beauty is still there, along with the quiet suffering.
It’s hard but I am trying to get back into Race for Grace fundraising gear. We don’t have a lot of time. I can’t help but be amused at the notion that Grace spent “10″ days…not 9 or 11, but 10 days in the hospital! I think she wanted to contribute to the 10 for 10 theme. I also think if we could think of contributing in terms of $1 for every day she spent in the hospital we could raise a quick and easy $10 from every person involved. Please continue to build the momentum of the Race for Grace 10 for 10 campaign. If you haven’t already, please forward the 10 for 10 request to as many friends and family as you can. Many people ask who to make checks payable to.
Donors can:
*donate online at www.TheRaceforGrace.com
*check out the Race for Grace Causes Facebook You have to join Facebook but it is simple and a great way to stay in touch with Race for Grace updates)
*send check to:
Race for Grace
34 Old Pine Road
Narragansett, RI 02882

Thank you again. God Bless GRACE!!!

RACE FOR GRACE 2009 ~ Saturday May 23 ~ 10 am ~ St. Veronica Chapel ~ 1035 Boston Neck Road ~ Narragansett, RI 02882 ~Registration starts at 8:30 am

Grace is home again which is quite a blessing. Especially when last week we really didn’t know if she would ever see home again. There is so much to do. We have to make our home safe for Grace, keep up with med management and keep in touch with her doctor and monitor her closely. Safety is the biggest issue because Grace is a drunken sailor right now. I pray that we will settle back into “normal” life (ha ha) and keep her sleeping and safe.
Thanks again for all your help and support. We really are continually overwhelmed by the love around us.
Peace,
Tara

Dear Friends,
Grace is still at Hasbro children’s Hospital. She actually slept last night and the night before (drug induced) for the first time in weeks. She’s extremely unstable on her feet during the day and very erratic at this time but we’re not giving up on her. She’s still fighting hard and so are we and her devoted doctors and nurses.
Everyone else is continuing to stay afloat and thanks to friends and family, my four other children are managing to have quite a nice school vacation. I’m sure they’ll never forget it. They’ve been all over the place.
Thank you all so much for the prayers and offers to help us. We are so grateful and will never forget the generosity of those around us.
I do still know that Grace is truly in God’s hands at this time and although it’s confusing why she endures all that she endures, someday I will understand why and I will be at peace.
I’ll let you know when Grace is home.
Love,
Tara

Hi there,
I came home last night for a good night’s sleep. I made blueberry pancakes this morning for my four happy, joyful children and the update on Grace is….
-still in hospital
-still not sleeping
-still no clear answers
-still suffering
For me, last night and this morning was a wonderful escape for David and me. I am anxious to get back to Grace, though and provide her with the only comfort she knows at this time- my arms.
I’ll keep you posted.

Just a brief update…
We went into Hasbro for a scheduled EEG (24 hour monitoring). Doctors have discovered that when Grace falls asleep, her brain goes into a hyper-state of brain spikes and seizures and it happens almost from the moment her eyes close.
Therefore, she is not getting any rest. We’ve been concerned lately about her state of exhaustion and at times, lethargy and now we know why. It’s so disheartening because of all the things Grace can’t do, we now know that added to that list is sleep and we all know how crucial that is to quality of life.
The night they gave her a treatment of a high dose drug (that came with its own risks we had to deal with) and she spent the whole night vomiting and also got no rest. The next day (yesterday), she could hold nothing down and also, was unable to sleep.
Last night, she went to bed without food or drink, dry, tired and again, unable to sleep despite the “high dose” drug treatment. She is still having her “pain episodes” also, which are cyclical and treated with a very strong pain killer. Watching her be deprived of basic rest and sleep is torture for me and torture for her to endure. She is in no condition to come home at this time so until she is stable, she will remain at Hasbro. (Thank you Dr. K!!) As usual, she is making lots of friends and is well cared for at Hasbro.
David and I are fine. I have a new definition of “tired” and have no complaints of our own, thanks to Grace and her struggles. We are now realizing that Grace hasn’t really gotten “sleep” for probably weeks, as we’ve suspected her nighttime activity was related to seizure activity but never thought things were this bad for her.
Everyone else here is fine. Kids are once again managing the shuffle and chaos of Mom and Dad in the hospital with Grace. They pray for her every night and all I ask is you do the same.
I’ll let you know when we are home again.
Enjoy your sleep tonight with new appreciation and be thankful for simple gifts that we all take for granted sometimes.
Love,
Tara

Hi again,
Right after I sent the “Gracery List” email this afternoon, I received about 5 “Google Alerts” about a new treatment for Rett. Attached is one of them. The study must have just been released to the press. It certainly refreshes the wind in our sails once again and reassures me that the efforts are working and we need to work harder than ever to bring us not closer to the cure, but actually get us to the cure. We are actually moving into a new mindset of raising not only research dollars, but also money for treatment and later: the cure.
Headed to RI Hospital (Hasbro) tomorrow for a few days with Grace for some testing and treatment exploration for seizure stuff. I will be around later in the week to get back to you.
Thanks again and enjoy the exciting news…knowing that you are directly responsible for contributing to the search for a cure for Grace and all the girls in the world who suffer terribly from Rett Syndrome.
Love,
Tara

Study Suggests Possible Treatment for Neurological Disorder Rett Syndrome

Hi there loyal friends of Grace,
Lately, I’ve been asked one question more than any other…”What’s up with the Race for Grace?”
We’ve been so busy keeping us all together, the Race for Grace has once again snuck up on us and is a short 3 months away. After the first Race for Grace, I vowed to never stress myself again by leaving only 3 months of planning time. Oh well. My intentions are real but it hasn’t worked out yet.
I guess I’ve also been stalling and wondering how I was going to begin asking people for money this year when David and I don’t even have extra money for Race for Grace this year.
We are tightening our belts around here. We are trying to line up resources and supports because the reality for us is a possible layoff for David. At this time, we are uncertain about the future, but we need to prepare. Every time David calls me from work, I am prepared for him to tell me he’s on his way home and his job is gone and hence, our health insurance for all seven of us. Once again, we have no where to go from here other than our faith and to trust that we will not be forsaken and God will take care of our business as usual. Despite many blows to our lives and family over the years, we still recognize the overwhelming balance that the blessings have brought to our lives.
That being said and you all now knowing where we stand, I have an idea for Race for Grace.
This idea requires more from you than writing a check and I am asking you to take a little extra time to dedicate to Race for Grace this year. I am hoping that every person that reads this letter can motivate 10 friends to commit to finding 10 people in their lives that they can ask to donate $10. My thought is that most people have $10 these days for a good cause. Even David and I have an extra $10.00!! Thank goodness.
It’s the 10 for 10 campaign. It sounds simple and as my old college professor used to say about certain statistical methods, “It’s quick and dirty” meaning fast, accurate and effective.
We all have three months to accomplish this task. Speaking of statistics, I was a teaching assistant in college for research statistics so I know well that only a certain percentage of you will actually do this for Grace. But I also know that if even half of you participated, we would end up with a very successful Race for Grace once again.
I completely agree that it’s just easier to just write a check of course. But Race for Grace isn’t just about money. It’s about awarenss. I will get pins, pictures and informational handouts available for anyone. We all know 10 people. Those 10 people that we know all have 10 people in their lives that they could flash a picture of Grace at and ask for $10. I know that all of you would give me $10 toward Race for Grace if I asked you directly!! You have all been so supportive towards Race for Grace. There are 250 of you all in this email file, which is amazing. But the ripples of 250 people reaching out to 10 friends each and asking those ten friends to reach to their ten friends…We are actually talking about reaching possibly $25,000 people and raising $250,000!!! Just by asking some friends to collect a mere $10!!
The National Democratic Committee called my house last week and asked for a standard contribution of $135. I told the woman that I truly do hope Obama can fix this mess and my prayers are with him, but we are a charity case on our own and we weren’t the most promising household to gain contributions from. She then went on to ask me if I would consider a lower level of support $75 I said,”No.” She then proposed their lowest level of contribution for $35, and I just laughed and told her good luck and have a great night. Gotta admire her determination. I aspire to have the same determination for my own cause.
So here’s the plan…print off a picture of Grace (file attached), make sure you can explain Rett in a basic way and find those 10 committed friends who will find 10 people to get the $10 from and we will all meet to celebrate at “Grace’s Big Party” on Saturday May 23, 2009 for the Third Annual Race for Grace.
Myself and the committee members of Race for Grace will be looking for corporate sponsors and working as hard as we can to raise money for Grace and plan another wonderful day. We are going to have a “quick and dirty” Race for Grace this year too. We are simplifying. We are going to have a DJ, as much donated food as possible, the 5 K event and plenty of spirit which will never run out even in this economy. We are rich in spirit and thanks to Grace, we always will be!!
Please let me know if you need anything from us to help you in your search for 10 for 10 for Grace.
God bless you all!!
Love,
Tara and the Race for Grace Committee

Check www.theraceforgrace.com soon for downloads, pictures and information to help you get ideas on how to find your 10 for 10 and how to make the best “Gracery List” possible!!