Fundraising Season

June through September is our big fundraising season for the FSMA Greater NY Chapter. We held some amazing events this summer. Been behind in my blogging so here is a brief summary of what we accomplished.

We held our first ever Golf Outing at Hudson Hills Golf Course in Weschester County. It was an amazing day. My cousin, Rob, who is also the Westchester County Executive came to the event and declared the entire month SMA Awareness Month in Westchester and presented us with a proclamation. We were able to take in over $40,000 for this event. Many thanks to everyone who helped. Here are some pictures taken from our volunteer photographer, Jeff Rhode.

Next up was our Annual SMA Awareness Day at Citifield with the NY Mets in memory of baby Stephen Ruocco. The families who attended had a wonderful time. We received a donation from one of the family members so that the kids were able to attend the game for free. The kids were invited on the field for an Spirit Award Presentation which we received with NY Met's Star 3rd Baseman, David Wright. Later on in the game the Mets played a PSA which we made to help raise awareness. After the game all of the kids were invited to be VIPs during the Mr. Met's Dash and run around the bases. It was a fun day for the kids and families.

Just a few weeks later we had SMA Awareness Day at Yankee Stadium with the NY Yankees in memory of Ciara Van De Loo. The Yankees were very generous and donated some tickets to the kids in attendance. A few of the kids were invited to go on the field for a presentation on SMA where we were presented with a check for $10,000 from Quest Diagnostics and the kids were greeted by NY Yankees star centerfielder, Curtis Granderson. Dylan was held back in order to get a hello from his favorite pitcher, AJ Burnett. We then enjoyed watching the Yankees win the ball game.

The Grand Finale was our 7th Annual Walk N Roll in Long Beach, NY in memory of Keira Sweeney. It was a beautiful day and we had 20 SMA families from the Greater NY area participate. We were able to raise over $74,000!!! Completely amazing stuff. All but $5,000 was raised as a collective effort of SMA families. I was so proud of how hard the Greater NY Chapter Families worked this summer to raise funds and awareness to hopefully someday put an end to this disease. Now on to planning next year's events.....

Becoming Aware

August is SMA Awareness Month. This has always been significant to me since Dylan was formally diagnosed with SMA on August, 4, 2004. The reason I even remember this date is because Dylan had just turned 9 months old on that particular August 4th. It was an awful day when a doctor called me on the phone and told me that Dylan would likely die before he was two years old. I remember feeling completely empty and devastated. I remember looking at him the next morning laying in his pack and play realizing that he would never sit up, never walk, never run, never dance, never catch a football. My brain was on complete overload and somedays I still feel that way, like I am on total overload. I like to think that in the 7 years since Dylan's diagnosis which rocked my world as I knew it that I have turned devastation into hope. I believe in letting Dylan live his life to the fullest. Whatever he wants I try to make happen.  I no longer sit by and wait for tomorrow -- I do it now. I live for today because you just never know. Our time here on Earth is precious and I refuse to let SMA ruin my family's time.

SMA. Three letters that changed my life forever on August 4, 2004. I hope and pray that one day when these three letters are put together they mean nothing. Until that day we continue to pray for those who battle SMA every day and for those who are forever angels. Thank you SMA for making me aware so that I can be one of the people who brings you down.



Dylan one day after he was diagnosed with SMA



At Heather's Recital

Have a Magical Day

It has been a busy summer for us so far. We spent the end of June and beginning of July in Orlando, FL for the annual FSMA Conference. Anyone who has ever traveled to Walt Disney World knows what a magical (& expensive) place it can be. Our kids literally explode with excitement when they hear they are going there and the fact that they were going to be there with some of their friends and family made it even better. The Conference was great. I always enjoy seeing some of my old SMA friends and meeting up with some new ones. I have also always enjoyed getting to speak one on one with so many SMA Researchers and SMA Doctors. This truly is like going to a family reunion. Last year's conference was in California and I didn't take Dylan. Besides the fact that I missed him terribly, the conference just didn't have the same feel for me without him being there. Having him with me not only puts my mind at ease but it is also a blast to watch him interact with the other kids with SMA. Heather jumps right in there too. Both kids did a lot of fun things while we were there. Dylan built a remote control Mater (character from the movie Cars) at Downtown Disney. Heather and her BFF Emma went to the Bibbidi Bobbidi Boutique and were transformed into Rapunzel and Princess Tiana. There was "Pixie Dust" everywhere...I mean everywhere, but it was worth it to see how happy it made them. We became very familiar with what the kids called Poncho Time during the Thunderstorms or as I called them, Mini Hurricanes. Dyl actually used to sing It's Poncho Tiiiiimmmeee every time it rained and gave me a fist pump. I think I need to ease up on my Jersey Shore watching. I paid $60 in wands at Harry Potter World which did nothing to stop the torrential rain that occurred. My best spells didn't work. I guess I was having an off day or maybe I just drank too much butterbeer.  In addition to seeing our SMA family, Ron's parents and his brother, Andy came up to visit us. We also were able to spend some time with our friends, Jackie & Sal. Gen and I actually met up with them one night and we stayed at Magic Kingdom until 1:30am. I think we rode almost every ride in the place. I got to go to the Outlet stores with Gen. Ron got to golf (twice I might add). Ron and I went on a wonderful date night where someone (not me) had one too many Nutty Irishmen. We also celebrated my birthday at Bongos which was a great last night to our trip.
On this trip I learned:
1. The Disney buses are slower than the Pony Express.
2. I need to take a Valium or drink a full bottle of Wine before entering Harry Potter World.
3. Everything in Disney costs at least $10 and that a bottle of water is considered a "snack" (Heather didn't care too much for that!).
4. At the Grand Floridian they say "Have a GRAND day!" instead of "Have a MAGICAL" day!" Maybe that is because of the GRAND prices they have there.
5. Disney Ponchos cost $8.50 (I found something less than $10!!!!!).
6. Bon Jovi cover bands while good, are just not Bon Jovi.

Now it is back to reality and getting back to eating something other than Mickey Ice Cream Bars, Mickey Rice Krispie Treats, Mickey waffles, Mickey Popcorn, etc. I think if I would have eaten one more thing shaped like Mickey Mouse I would have sprouted a tail and some mouse ears. Back to yogurt and salads, although maybe I did sneak a couple of those rice krispie treats home.

Bibbidi Bobbidi Boutique!



MJ, Peg, & Dyl



Heather & Madison

Dyl & Kiley

Kevin & Ron thought highly of the Theme Parks

Meeting Rapunzel and Flynn

Arthur & Dyl at the Boma

More Butterbeer!!!!!!

Meeting Phineas & Ferb

Magic Kingdom at 1am!!!



Last Night Celebrating at Bongos



Best Buds at the TRex Restaurant



Some of the Greater NY Chapter Families


When we got home, Ron surprised me with tickets to the Yankees/Rays game on Saturday, July 9th. Just by luck of the draw this was the game when Derek Jeter hit his 3000th hit. I have been to many many many Yankee games but this one by far was one of the most special. The Stadium was just electric. Dylan kept saying how awesome it was. When the game was over a man came over to us and gave Dylan a limited edition pin to commemorate the day. It was nice to see someone do something nice for Dylan. Heather was just excited that she was able to have pink cotton candy. I was glad it wasn't shaped like Mickey Mouse. Truly a magical day.

Dyl's Communion

May has been a long and busy month. At the beginning of the month, Dylan received his First Holy Communion, a day I really never thought could be possible. The reason I didn't think it could be possible was because since Dylan was 18 months old he completely lost his swallow. I started to notice Dylan having a problem swallowing around his 1 year birthday. He was starting to choke on bottles a bit and then in the January after his first birthday he came down with the Flu and his swallow was greatly compromised. I remember taking him home from the hospital with a GJ Feeding Tube and still trying to give him things by mouth. How stupid of me because due to that he choked a few times and had some major desats. Finally when he was about 18 months old I said no more food by mouth. Period.

Faith is something that is really important to me. I grew up Catholic and I wanted the same for Dylan and Heather. A few years ago I approached Arthur (Dylan's nurse) and asked him if he would become Dylan's religious mentor. Arthur was definitely up to the task. He worked with Dylan a lot and Dylan had to understand Arthur's new role as spiritual advisor in addition to being one of his best friends. We started to bring Dylan to church. This has always been difficult for me because I always feel Church can tend to be one of those super germy places I usually like to avoid with Dylan like the supermarket or the mall. Our parish, St Agnes Cathedral in Rockville Centre, is fabulous. The priests are very accommodating to our situation and there is a large handicapped section which is away from the germ fest. I also try to avoid going to the family mass because again there are always a lot of sneezing and coughing children. Arthur helped us to realize we could bring Dylan to church and to not be nervous in doing so. Arthur also made Ron and I realize certain things about our faith and I think we in turn explained to Arthur how we felt about certain things.

At a certain point, Arthur told me he felt that Dylan was ready to receive First Holy Communion and his First Confession. We contacted St Agnes and Fr John McCarthy assisted us in all of the details. Arthur suggested that his parish priest and friend, Fr. Robert assist us in Dylan's final preparation. Fr. Robert is a wonderful man. Dylan and Heather both truly enjoyed his visits and I enjoyed his guidance. Arthur and I explained to Fr. Robert how Dylan did not swallow. Fr. Robert said that he would use a very small piece of host and that his should melt on Dylan's tongue. Arthur took a few pieces that were not blessed and we practiced at home with Dylan. In preparation we also did a lot of extra oral motor exercises with Dylan. Poor Dyl, I was like a drill sgt...OPEN, CLOSE, RIGHT, LEFT, TONGUE OUT, TONGUE IN.

The big day arrived and Dylan was in good form that day. He wasn't junky and he didn't need a lot of suctioning. He knew this was an important day. My friend, Erin, from Lilly-Pop Photography took some beautiful pictures of us that morning. We arrived at the Cathedral and saw Fr. John and Fr. Robert. We hung Dylan's name banner on our pew and took a few pictures of him. Dylan was so excited to see so many of our family and friends at the church. He told Ron and I that he wanted Arthur to sit up front with us. When it was time, Fr. Robert came up to us and Arthur advised him on how big (or small) the piece of host should be. I then helped Dylan to open his mouth really wide and Fr. Robert placed a small piece of host on Dylan's tongue. I closed his mouth and after a minute we asked him to open it and there was nothing there. Fr. Robert put his hands on Dylan's head and said, Dylan now Jesus lives inside of you and Dylan yelled out a big YEAHHHH. It was a great moment for our family and I was very proud of him. It was so great that Dylan had a moment where he was just like the other 7 year olds in our neighborhood, receiving his First Holy Communion just like everyone else. I don't really know why I was so stressed considering how I saw one little girl spit her Communion out leaving her mother to pick it up from the floor and eat it and another little boy put it in his pocket.

Dylan & Arthur

Dylan & Fr. John

Dylan & Fr. Robert

A few days after Dylan's Communion I received a telephone call from the office of Senator Dean Skelos telling me that I had been selected as his 2011 New York State Woman of Distinction. I literally almost fell over. I felt so honored to have been considered and chosen for this award. It felt great to help raise more SMA Awareness in the great state of New York. I can never thank Senator Skelos enough for giving me this great honor. Here is the link to the press release on Senator Skelos' website:

http://www.nysenate.gov/story/senator-skelos-honors-debbie-cuevas-2011-woman-distinction


Of course upon our return from Albany, Dylan had a fever, Heather has a double ear infection with swollen glands and I have strep throat. Poor Ron had been playing nurse to all of us. At least we have been getting some much needed spring cleaning done.

All of us with Senator Dean Skelos

Happy Memorial Day weekend to everyone. Remember those men and women who have fallen to keep our country safe and free.