Dear Ms. Spigarolo, Mr. Kraft and the New England Patriots Team:
I want to extend a sincere thank you, on behalf of all families with children with special needs, for providing access to enjoy your training camp. This year was even more important and special for our community. Two of our families that have children with Cornelia de Lange Syndrome (CdLS) were able to attend and had an experience of a lifetime.
CdLS is a rare, genetic disorder that is present at birth. CdLS occurs in approximately 1 in 10,000 live births and the CdLS Foundation is honored to currently serve over 2,800 individuals with this syndrome. It can often be an isolating condition for both the individual who is affected and their families.
The Russo and Sanchez families were able to attend and I was able to talk with them, they spoke about their experience. I wanted to share with you how much it meant to them to be a part of your day.
Tracy Russo, mother to Thomas (who has CdLS): “As a Foxboro resident the Patriots organization offers free tickets to their in stadium practice every year. Last year was the first year we took advantage of the opportunity. As avid football fans we wanted the kids to have a “game” experience. Emma, 6, was the driving force to go but we always try to experience as much as we can as a family. Thomas seems to enjoy the excitement of the game atmosphere and enjoys the family time. The Patriots do a wonderful job of making access easy for individuals with special needs and their families. They allow us front row access to the players during the autograph signing session. Most of the players try to come by and sign autographs. This year we enjoyed the practice with Amerah Sanchez and her family. Nyeemah, Amerah’s sister, is close in age to Emma. It was nice for the girls to spend time together. As siblings of CdLS kiddos they don’t often have the opportunity to spend time with other siblings. It isn’t always easy to attend these types of events with Thomas. We appreciate the Patriots organization’s efforts for inclusion at events and in the community.”
Chandra Sanchez, mother to Amerah (who has CdLS): “Our day attending the Patriots event was amazing. We were invited by Thomas’s family to spend the day and attend the event as they are residents of Foxboro and had access to tickets. This also provided our families the opportunity to get together as it’s not always easy. Amerah seemed to enjoy herself. There was so much going on and so much to look at which was very stimulating. Amerah’s younger sister attended as well and was able to hang out with Thomas’s younger sister, Emma and instantly bonded. Football and being Patriots fans has always been a huge part of our family culture and always finds a way to bring our family and friends together whether we watch from home or attend a game. I’m especially grateful for the handicap accessible access at Gillette Stadium and the handful of Patriot players who took the time to come over say hello and sign autographs. We all felt included and acknowledged. If there was one thing I could tell the Patriots about Amerah and CdLS it would be; although a reaction of excitement may not be visible to the naked eye, does not mean that impact is not being felt within.”
From the bottom of our hearts, thank you,
Sincerely,
Bonnie Royster
Executive Director
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