We recently had the unique opportunity to meet and tour with an amazing girl named Mirai. Mirai is a friendly 7 year old who lives with 5p-(five p minus) Syndrome, a genetic condition in which a portion of the 5th chromosome is missing. Amongst other things, some of the characterizations of 5p- is poor muscle tone and difficulty with language. Mirai and her loving family work hard everyday to overcome the challenges associated with this condition.
When we met Mirai in her Eastchester home, she welcomed us with many hugs and a big smile. With the help of some great technology, she was able to communicate how much she loves her family and large toy dog, Brownie. We learned that one of her favorite activities is to watch ice skating, however, due to her condition she is unable to strap on skates and get on the ice herself. Our goal was to make ice skating a reality for Mirai and we did just that by creating a Stuffed in the City traveling stick figure of her! We snapped a fun photo, printed, cut, mounted it (all with Mirai’s help!) and were on our way to Central Park! Her toy dog, Brownie and a cut-out of her sister, Sekai joined us on Mirai’s adventure. Here are some snapshots from the day:
Mirai enjoying some hot chocolate as we wait in line to rent ice skates:
Brownie and Mirai posing on the ice:
There are so many ways to give this holiday season. Please join us in supporting 5P- by visiting: http://www.fivepminus.org/index.htm