A Special Guest Blog!
Posted on July 17, 2013
The following was written by Tammy Henegar. It describes how much fun her son Braedan had, when the JettRiders came to their hometown of Curtice, OH on July 13, 2013 and spent some time biking, playing mini golf, catching snakes and eating ice cream sundaes!!!
We had a great visit once again with the JettRiders this year. We had an amazing reception when they arrived with lots of food and fun. The kids of course took advantage of the pond to cool off in right away. Jeremiah Przybylski (Braedan’s gym teacher) led the way again with the kids and Scott and I through Toledo to our house.
We picked Braedan up in the Duet bike a few miles out from our house and Scott and I took turns riding him to our place. He loved that and seeing the crowd cheer them on was priceless.
They got to meet some of my Duchenne friends, Tom Kevin Sulfaro (41 yrs old with Duchenne), Bob Sulfaro (his brother and long time care giver) and his nurse and friend Connie Lange. They also met the McNutt Family (Jackson, has Duchenne and Autism and I believe he is 5). They swam, played on the beach in the sand with Braedan making sand castles, streams and ponds for his critters, snake hunted, and even went for a 5 ft. bananna split sundae at DG’s.
On Sunday, we joined them in Sandusky, OH to meet up with The Porter Family, which was the first time we had actually met in person, so that was nice. We spoke to them a lot, sharing some knowledge of things that we have learned on care for Duchenne and the boys played a bit. Austin took a ride in the Duet as well, and it was great to see his happy smiling face. After dinner and Pauly was done making his final arrangements for the next day, we headed off to Goofy Golf to have a blast once again Go Karting and Putt Putting, oh and must not forget the Bumper Boats!
At the end of the night, we went back to the church and Braedan asked if he could play with the boys a little longer, I said a very little bit because they need to get to sleep and we need to get going home. They ran in to the church and went down to their Man Cave. After a bit, I sent Scott down to get him and when they came back up, I could see that Braedan had been crying and they all looked a bit sad. He ran to me and said “I want this to last forever.” It was definitely hard to choke back the tears wellowing in all of our eyes at that time. After a few minutes Colby came up, and gave Braedan an enormous hug, and asked him to hold on to his Boston Red Sox hat and to bring it to New Jersey with him when they see each other again. Ahh.. I thought that was so great of him.