Saturday March 26th 2011 was a defining moment for SMA. An evening where everything stopped and the story of our children took center stage. The New York Islanders went above and beyond what any other professional franchise has ever done for SMA. The generosity and compassion that was exhibited started well before face off on this night. Their commitment became evident over a month prior when they invited us to the arena to shoot a PSA for our disease. That public service announcement started airing at the nassau coliseum the next night during home games and continued until the conclusion of the SMA Awareness Night. Former American Idol contestant Robbie Rosen at the age of 17 displayed a poise that was well beyond his years. This could have very easily turned into a night about Robbie, but he showed this uncanny ability to manage the excitement and was able to balance everything to ensure the focus remained on Sophia and the story she was going to tell.
Our night began with an early arrival to the Coliseum. To our surprise the parking lot was near capacity an hour and a half prior to the game. The Islanders had reserved a spot in the VIP parking lot for us and had staff waiting for our arrival. Once we were inside they assisted in moving the crowds to expedite our navigation to the media room. When we got there, press and public relations were everywhere. NY Newsday was going to interview us and were just finishing up with Robbie. As soon the door for the room swung open and Lauren Rosen (Robbie’s Mom) saw Sophia everything stopped……….everyone had to wait as Lauren, Robbie and Matt Rosen (Robbie’s Dad) came running over to see Sophia. To the Rosen’s the media frenzy was not as important………..they just wanted to see Sophia because they had been so worried about her since her hospital stay. Sophia was happy to see them too. As we went in to do our interview, Robbie had to leave for his meet and greet with fans. We finished our interview and were greeted by many different representatives of the Islanders to see if they could assist us in any way. They made us feel at home. It was getting close to face off and it was time to start making our way to the seats. On our way to our seats we heard a familiar voice say “Hey there’s Sophia” it was The New York Islanders #14 Trevor Gillies. He was the player Sophia had shot her PSA with and he came over to say hello and check in on her. It was nice to see him again.
We were heading towards our section and walked passed the table that was set up for Robbie. There was a line of fans waiting to meet him and to get his autograph. Looking down the corridor I could not see where the line ended. When we arrived at our seats the Coliseum was loud, there was a buzz in the air. Catherine and I were nervous that it would be too much for Sophia. The Islander staff helped to settle us in and Sophia had a great view of the ice. All of a sudden Robbie appeared on the Jumbotron. It was a pre-game interview and Robbie was talking about why he was there…..“Make it Through”, Sophia and SMA! We were so excited but it didn’t end there…………immediately after Robbie the PSA for SMA aired as well. We were in awe! Things move very fast at a hockey game. The puck drops, the game starts and almost immediately the gloves come off! There is a fight……….the crowd erupts! Catherine and I were so worried about Sophia with all of the noise. We look at her pulse ox and Sophia’s numbers looked great. We could not believe what we were seeing, I leaned over to check her face and Sophia’s attention was glued to the Ice……..she couldn’t get enough of the action! We have always worried about crowded places……. and too much noise and how Sophia would handle that. We learned a lot that night………it looks like we will be more adventurous in the future and there will definitely be more Islander games for princess Sophia! Jackson did great as well, he even slept through some of the loudest parts of the night. The first period ended and we knew Robbie was doing a LIVE interview with MSG plus and once again he mentioned why he was performing that night. The Islanders checked on us many times throughout the night to see if we needed anything. The second period started and about 5 minutes in they came to bring us down close to the Ice. In the tunnel we met up with the Robbie and his family. We were all so excited……. we understood the importance of the next five minutes.
The gates came up and it was time to move. We wheeled Sophia out and we had butterflies in our stomachs because we didn’t know how she would handle the situation. Robbie started singing and I was kneeled beside Sophia…….holding her hand and checking her numbers. She was very relaxed. Sophia was watching the Jumbotron the whole time and I know she was excited to see all of her SMA friends up there as well. Towards the end of the song I leaned over Sophia……. with my voice breaking I whispered in her ear how proud I was of her, I was proud to be her dad. When you first are diagnosed you think of all the moments you will not have with your child, that you had envisioned. Walking her down the aisle, dance classes, cheerleading. We have learned that we can still experience these great moments in our children’s lives. Saturday Night on the Ice was a defining moment in Sophia’s life………..I was so honored to be able to experience such a special event in her life with her. A moment she may have never experienced if she did not have SMA. Sophia left her footprint on Spinal Muscular Atrophy and it will be there forever. As the song ended we were headed back to the gate and the Islanders transitioned right into the SMA PSA once again. Sophia was walking side by side with Robbie and she would not take her eyes off of him!
Behind the scenes Sophia, Catherine and Jackson said their goodbyes to everyone. We wanted to get them home and into their beds, it was a long night for them. Luckily we live very close to the Coliseum and I was able to return fairly quickly for the post game skate session. The Islanders helped The Sophia’s Cure personnel organize everyone in my absence. When I arrived Robbie was signing autographs and taking pictures with the attendees. There were kids skating on the ice, it was just an incredible experience. We were so thankful to everyone who came out in support of this event and shared in this magical moment for Spinal Muscular Atrophy. To my surprise, every single person who attended was thanking us. Everyone had a great time, the parents of the kids skating loved the event and were very appreciative. Julia a little girl from Brooklyn who had learned of Sophia when we were newly diagnosed was in attendance. She created this wonderful card for Sophia and this was the second event her and her family had come to. Julia has touched all of our hearts, sending birthday cards and messages to Sophia throughout her journey. Joshua Rose from the NY Islanders had been very involved with this whole event from the beginning. At the skate session Josh told me something that stayed with me……….Josh had worked many games and had numerous performers during the intermissions. He relayed to me that he had never seen what he had witnessed Saturday Night. The stands were packed during the intermission……….nobody left their seats…….they all stayed to watch and listen to the performance of Robbie Rosen and “Make it Through”. Everything stopped for those 5 minutes and so many were moved by the story of this disease. To add to the magic of the event……… our section had won the free t-shirt giveaway of the night!
I am so thankful to Dora (Catherine’s cousin) and her family for helping to organize this amazing night. Thank you to the Ice Cats and Gulls league, Respironics, and Mike’s Bayview Deli and Caterers for your sponsorships. To Judi Schiffmiller (Sophia’s social worker Angel) and her entire family husband David, and children Ethan and Gabrielle (friends of Robbie) for introducing us to the Rosen family. Thank you to Howard Saffan, David Hochman, Erin Willey, Ann Rina, Joshua Rose, Trevor Gillies and the entire NY Islanders Organization for an amazing event! Thank you Lauren, Matt and Robbie Rosen for everything you have done for my family, and the entire SMA Community.
We’ll Make it Through……………..Together!