Mary Caruso

no matter what...knowing they are always there for you!

So I have started to enjoy writing these posts.  What I have discovered is that I only feel compelled to write on good days!  About the fun times, the inspirational encounters or happy days!  So quite honestly I haven’t written in two weeks because it has been a heavy uphill battle!  BUT!  As always I have been able to find the good in the challenge.

It all started about 100 years ago (really two weeks today) when I went to yoga class with Janie.  I have been doing yoga now for about 14 years.  I started when Sam was diagnosed in 1995, I brought her to a doc in Boston who specialized in integrative medicine.  He wanted her to eat, drink and breathe yoga!  So we started together.  She hated it…….I loved it.  It has brought me through some very difficult times.  It is exercise, relaxation and discipline.  I always walk out of a class feeling so great!  There isn’t a drug in the world that can make me feel like that.  SO!  I am at this yoga class and it is a great one!  Each person is responsible for their own level, and knowing what they can and can’t do.  I know that much……so what the heck was I thinking???? I knew I threw out my back when I left.  But the overwhelming relaxation and empowerment overshadowed that dull pain until Tuesday morning!  HOLY COW!!!! I was down and out!

what's his name with sam

I spent the week, icing and relaxing and laying flat on my back so by Thursday I was feeling pretty good!  I was determined to bring the girls to Albany to watch the Giants practice and that I did.  It was a BLAST!!

yes siree! ON the field with the giants!

Despite the three hour ride we really enjoyed it.  I took Sam, Aly, Brina, & Annie and as Annie kept the mantra up that it was going to be a great day………..A GREAT DAY IT WAS! It ended with a fun dinner in North Branford where Erica and Johnny D met us and to me that is what is important in life.  Sitting down with friends; laughing, talking and sharing!

The weekend went just as well with working at the potato festival, helping

my friend suzy

Suzie with her Open your Heart for the Community project (namely US)  and on Sunday cooking with my Chamber Friends.  Life is certainly good to me!

Becky is one in a million

Monday morning I got up so excited to get back to work.  Dressed in my MJ McCabe Garden Design shirt I got up early to help Sam get ready for work and we headed for the car bound for ESPN in Bristol.  It was an ordinary transfer into the car,  I do it all the time.  Until I realized that I had her wheelchair too far from the car and she slipped.  Please don’t worry!

I would never let Sam fall!

I caught her and also felt the excruciating rip in my back.  I got her into the car, hobbled into the house, grabbed the ice pack and headed for ESPN!  I refuse to give the grisly details!  It was a bad week!  It was a week filled with unbearable pain, many drugs and zoning in and out of reality.

Mary? Are you ok?

But what I can tell you is this!  Family and friends are amazing!  Even when they are yelling at you.  They do it because they love you .  Once again Jackie came running down……….

came in a moments notice

I couldn’t get up and I couldn’t lay down and anything inbetween was impossible.  She actually knew I was in trouble.  She said as she was sleeping my mom was trying to let her know.  It was very weird.  I waited until 7am to call her and as she picked up the phone in this very concerned voice I heard, “ARE YOU ALRIGHT?”.  She was down in a flash!

The girls stepped up to the plate and handled so much for me.  They have the best PCA’S, no I have to call them friends or even extended family because as boring as it had to be for them, they kept the house running and everything on track.

Aly and Lauren really helped

gee! who could this be?

Friends brought dinner, arranged for rides, did cleaning and all the while I laid flat on the couch like a vegetable!  Amazing how many people it takes to do what I do!

Suzie keeps telling me that my spirit guides are trying to tell me something.  Believe me, I am the first to admit that we all need to be more compassionate.  I wonder if I REALLY DON’T know what it is like to have to depend on people?  I mean this past week I couldn’t even walk across the room!!! HMMMM  WHO do I know that has that problem?  I think I will keep digging down into my soul and see what I can do to improve myself!

Gimme JUST one taste matt!

Maybe I need a humbling experience?  A little humiliation?  Well, if anyone has any suggestions please give me a shout and let me know what I am missing!  I am always happy to do what I have to, to improve myself!

So things are looking up!  And by the way isn’t it funny looking at my friends from down on the couch?  We are busy working on the fundraiser.  No I haven’t been back to work yet, but there is just no reason worrying about something I can’t change right now.

friends... here in the good times and bad

I am seeing an Ortho guy today and hope to get into Jackie Kos this week and slowly work my way back to “normal”!  This time I will spend more good energy exercising and doing what I have to do to keep myself in great shape and more flexible!

The people in my life depend on it! And they are all getting stiff necks from looking down at me

sick of that ceiling!

I know one thing for SURE!…………….

I have way too much to do in life to sit and watch the cracks in the ceiling!

So!  Count your blessings today!

I know I will…….Glad to be sitting and able to drive 1/2 mile to Big Y !  YaHOO!

In Love and Peace!

Always

Meir

This week  I got home from four very hectic days!  I was a worker bee for FARA’s 2009 Therapeutics’s Conference.

Yes, they were long days, from about 6:30 am to 10:00 pm each day, running crazy and never seeing the light of day.

working very hard

so many great minds!

The FARA team worked very hard getting the best of the best together.  We assembled researchers from all over the USA as well as Italy, Canada, Australia, Spain, London, Israel, Belgium the list goes on!  These people are absolutely AMAZING.  They presented their work and then had great discussion around the room.  They shared ideas, made comments and formed teams.

They are our hope and our heroes.  These people hold the key to the future for my daughters!  So as much as I cringe each year worried about our event, I come home from this productive and promising conference knowing it is the only thing I can really do.

the end of day four....

But knowing that it is money well worth raising!

Aaron Stanford supporting us in California

So it is with hesitation but great excitement that I announce that this years fundraiser will be held on September 11th at the same wonderful place.  The Owenego Inn will be the beautiful back drop for us all coming together with a common goal.  This year I will also dedicate the evening to the team of the movie, The Cake Eaters.  The movie brought such great opportunity to us, it created an awareness for the disease of Friedreich’s ataxia a special thanks to Jayce Bartok, the screenwriter who decided to focus on Friedreich’s ataxia, that was just the beginning.

Jeremy and Mary Stuart supporting our fundraiser

It was also an experience of a lifetime for the girls.  They made wonderful friendships and had so many great opportunities through Mary Stuart Masterson and her husband Jeremy Davidson.

Sam & Alex with Mary Stuart, Jesse and Aaron; true supporters and great friends

They are truly special people. Aaron Stanford has also become a staunch supporter in so many ways.  So with the help of the producer Jesse Scolaro I am getting all kinds of great stuff from the movie and just maybe if we are lucky we may have a few of the cast and crew present.  They are a kind and a really fun group! So fingers crossed we will see some of them.  But with them or not we will go on and have an exciting evening.  I am always so humbled by the outpouring of all our friends, that one night gives me enough strength to last the whole year.  I thank each and every person that supports us in  our endeavor.

Outback Steak House will once again supply us with a wonderful dinner and Craig will be the man of the evening bringing us his humor for the auction.  We are working on some fun surprises and we have great auction items coming in so we hope everyone can make this year.

Our first conference when the diagnosis came, Dr Bronya Keats still sits on the FARA board today!

The biggest part of this journey is to remember that as soon as a diagnosis was given to us I decided to start doing something to help the girls.  I quickly found out that the only thing I could do really is to raise money and try to find a treatment!  I have watched them both grow to become strong and admirable young women against all odds. This gives them hope and the ammunition they need to continue on with positive attitudes.  And I thank you all for helping me give them that hope!

Alex has set up a webpage, please check it out at

http:// www.findacureforfa.org

Hope to see everyone on September 11, 2009 at the Owenego as we move forward to a cure for Friedreich’s

a great team celebrating the end of a very successful scientific meeting!

In Peace and Love

Always

Mary

One of the things that I admire in both of the girls is the fact that they don’t just sit around.  They put themselves out there all the time.  That isn’t always that easy as you set yourself up for disappointment but to have the determination and the effort to reach for the stars is such a positive thing!  Sam attended a seminar put on by Southern in April.  This very valuable seminar was designed to inform students about how to make themselves more employable.  One of the panelists was an executive from ESPN.  Those of you who know Sam know that she has ALWAYS dreamt of working at ESPN.  She is a sports enthusiast and played many sports before her diagnosis in 1995.  From that one meeting Sam was able to get a business card from this gentleman, Matt and kept in touch.  He guided her and gave her some great advice, all of which she followed through on.  This eventually turned into a telephone interview which turned into a personal interview which turned into a summer apprenticeship!  She is in her glory, living her dream!  She goes to work excited and brings that enthusiasm home at the end of her day.  Another great bit of information about ESPN is that the few people that have been involved in Sam’s working relationship are AMAZING!  ESPN appears to be a company with a heart, a company that works as a team, a company that cares about it’s employees.  Joe and Marc are open minded and compassionate, they get the big picture of life.  They see Sam for what her abilities are and know that getting her the tools she needs to put her on the same playing field as others are obtainable.  HEY YOU GUYS! Thanks for validating all my years of work.  All those years of instilling in the girls that they need to work hard to obtain their goals, to never give up hope!  Sam is hoping that this will eventually turn into her dream of a career at ESPN

Alex has also found a job in her chosen field.  Alex has decided to study palliative care Social Work at Southern.  She loves to work in this field, which is so admirable.  She also worked hard to follow through and get a summer job at Hospice in Branford.  I have accompanied her and can tell you that it takes a very special person to work in this field…….which I can tell you is Alex.  She is kind and insightful, she is full of compassion and has the most wonderful way with people. She has also been persueing her dream this summer at Hospice.

Alex is also working with a wonderful group of people who understand the importance of dignity and respect.  She is learning so much and also getting so much out of this experience.

I am grateful for the chance to see both the girls living their dreams this summer.  I see other kids their ages and they don’t have half the energy or drive that they do.  I hope they know how very proud I am of their accomplishments.  They don’t sit around and contemplate their own lives there is no pity-nor should there be!

Considering this summer was starting off with no one working and both girls thinking it was going to be a long boring summer…………..it has turned out really well!  Life is Good!

In Peace and Love Always

Mary

the start of our journey

a few of the members along with co-founders Ron & Raychel

It is not necessarily the easiest thing to do.  Deciding to take part in a drug- trial is serious business.  It is exciting because when Sam was diagnosed there really was nothing going on.  AND I mean NOTHING.  Yes there were a few people working on cloning the gene.  That means that they didnt’ even have a way to confirm a diagnosis through blood work.  Sam had to go through some pretty painful testing to have a diagnosis that was given based on clinical measurements.  A year later the gene was cloned and that was a big step for many reasons.  It meant that people could forgo the painful testing and the research could just go on in a more precise manner, and that is exactly what it has done.

With the help of a wonderful group-FARA- research has just taken off.  What is equally as important is that fundraising and awareness have also taken off. It seems like in the last ten years things just keep moving along in a positive way.

Paul brings such expertise along with incredible passion to the board.

Tom & Jen hard at work

So this brings us to our journey this week.  Sam has been brave enough to sign up on the FARA patient registry site and has also been lucky enough to have been called upon to take part in a clinical study for a drug.  Since I am really worried about the sensitivity of the whole thing I don’t want to say anymore.  But as in everything else in our journey together this has been a wonderful trip!

We have been able to take time to talk and laugh and meet all kinds of great people.  The worst part-leaving Alex.

my other hero

We are so used to being the three musketeers it seems so unnatural to split up.  But it would have meant finding one more person to come along and we just didn’t have a lot of time to pull it all together.  So she will enjoy some relaxing time away from us.

ok so I did most of the talking

We took the train so we didn’t have to worry about driving.  We enjoy taking the train as it gives us time to slow down and meet people.  We met this great young man who was getting deployed to Korea, he is with the Army and he was really sweet.  What was so very moving was that people would just walk up to him, shake his hand and say “Thank you”. I am embarrassed to say I never do that, but that I will do it now.  What a wonderful way to show respect and gratitude to these brave men and women who serve our country!  I cried and Sam was embarrassed.  But he was a dedicated and kind man we really enjoyed our time with him.

We got to Philadelphia and had a great walk up to our hotel.  We stay at the same hotel when we come so by now everyone knows us and it is a very friendly encounter.  We window shopped and talked and interacted with people on the way.  We had this GREAT dinner together at a Mexican Restaurant.  We started first for another Mexican restaurant that was recommended but after the long walk we found that it was not wheelchair accessible, but worse was that when I went in to try to cheerfully request help getting Sam up the stairs I was met with blank stares and a flat “no”.  Oh well their loss because it came to me than that there was this other Mexican Restaurant closer to the hotel. We found our way over and got to sit outside, it was beautiful weather in Philadelphia and the food was great!

Sam and our waiter Brian

We had a charming and funny waiter, Brian.  He and Sam had a great time bantering back and forth.  We had a wonderful meal and walked around the city some more before we crashed back in our room for the night.

The next morning we got up early and eagerly made our way to the hospital.  It really is odd to say but we love coming to CHOP.  The team “our team” is made up of the most amazing and well qualified people …ok I am going to say it …..IN THE WORLD!

The BEST neurologist in the world!

Dave, Erin, Lisa and now Baali…………. are just AMAZING.  They are the best of the best and then they treat you like a human being on top of it!  Something just doesn’t seem right about that!  Just kidding!  We love to go because we know we are getting the best care around, we truly enjoy their company and we feel like we are on the right track!  So we got there and saw our “team” and the table turned for Sam for the trial.  Without saying too much half way through the morning it became apparent that this was not the drug trial for Sam.  My heart broke for her only because her concern was she was letting “the team” down.  But what she doesn’t know is that she is still our hero!  What is important is that she stepped up to the plate.  The fact that so many of our kids and patient population step up to volunteer is what matters.  The rest is up to the investigators, criteria and yes maybe even a little ……..fate!  So our journey took us to an early trip back home but not to the end of the journey.  Because as we all know the journey continues……………….and through it all Sam remains my hero

So if you are willing and able give her a little “shout out”!  She deserves the acknowledgment!

With love and dedication to my girls and all those who volunteer their time for these trials.

Always

Mary