Mary Caruso

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

I was brought up by kind and very religious parents.  Especially my dad, he would attend church every single Sunday like clockwork.  He was a very supportive parishioner and was known by all within the congregation.  Although my mom didn’t attend church, she had great faith.  She questioned that faith and we talked so often about it.  She would remark that she probably didn’t go to church enough and wondered how God would feel about that.  My response was always the same.  I really didn’t know anyone who had a bigger heart and who felt as much empathy and kindness to her fellow human being. She gave and gave of herself to so many.   What else would God want?

Growing up I gave my parents a run for the money on many occasions……..I was a rebel in many ways and pretty much rebelled against anything that was conventional or formal.  I guess I am still kind of that way.  So maybe I wasn’t as religious as I should have been.  But I do have faith and I do believe that we are meant to be here and live life with kindness, respect and dignity for each other.

Much of how I make it through life is because I do have such strong faith.  People ask me constantly how I do it.  I can’t explain it really, except to tell people that I just know it!  I just know that there is a reason for everything that happens, and that there is something bigger and better for us.  We can’t question why things happen in our own personal journey but we have to know to rise above it and carry on with a smile and a positive attitude.  And we do this with the help of the people around us.

There are so many young people in our lives……..both Sam and Alex have some great friends.  They are all welcome in our home and  we enjoy so so many hours of laughter and conversation. Of courese there are some who were destined to be in our lives, I really believe that.  One of these people is Erica.  She has been a friend with Sam since they were in eighth grade.  It hasn’t always been a smooth ride but she has hung in there, as has Sam.  Through thick and thin she remains true to us.  We have watched her grow into a warm and accomplished person and we are proud to have her in our lives.  I am pretty sure I speak for Sam and Ally also.  We have traveled together and laughed and cried together.  Last month we had the priviledge to attend her pinning ceremony at Salva Regina College.  Erica received her degree and is going to be a nurse at Yale soon.  We were especially excited to hear that she was getting a special award also.  So this was a great day and a memory that I will hold onto forever.  My mom was a nurse way back when, a career that she loved so but gave it up to raise three daughters.  The fact that Erica is also becoming a nurse would have made my mom so happy, she also knew Erica and saw the same great characteristics in her that I am bragging about!

So this blog post is for Erica!  For becoming the beautiful woman that she is.  For all her great attributes and those annoying organizational skills she has.  For the hours of conversation and the hundreds of dinners we shared.  For her constant help when I reach out to her and for the  heart of gold she has.  And for the beautiful photo that she ran over to me yesterday in such a spastic way! That photo that continues to send chills down my spine because it has touched my heart and my soul!  Because LISTEN EVERYONE, it is the faith in my heart that helps me to believe in myself.

Please look at this photo and know that there has not been any alteration to it, to me it is a reaffirmation of my faith.  It is validation that my mom is with me and giving me a definite sign.  Just what that sign is I do not know.  Is she happy with my Open your heart campaign-you know this blog?  Is she telling me that she loves me?  Is she proud that the girls and I made that trip to support Erica?  It really doesn’t matter…….and for all you skeptics….go ahead just try to rationalize that heart over Erica’s shoulder!  

I know in my heart that it means she is with me and always will be…………for the love of my mom is so evident in this photo.  Seeing it brings such peace to me and will forever.

In Peace and Love

Always

Mary