Some of you know that our son, Michael was born with TAR Syndrome (Thrombocytopenia absent radius). TAR Syndrome is characterized by a platelet disorder and an absence of the radius (arm bone). Michael has no upper extremity bones and has hands in the shoulder areas. For Michael this means that both hands are short extensions near his shoulder joints. His legs are affected as well. He has no knees/patella.
Michael is a caring, loving, funny, charming, and a social 12 year old. He loves playing on the Xbox, and playing soccer and football on the floor with his younger brother. He loves the Bruins, Patriots, and the New England Revolution soccer team. He enjoys hanging out with his friends and collecting football cards.
June 22, 2016
Michael had another leg surgery on June 8, 2016 to take out the metal plates in his legs. By June 10th he was off all pain medications and was asking if his friend Thomas could sleep over. I told him I think it is a little too soon and possibly next week. And by the fourth day after surgery he was rolling around on the floor to get around. Doctors orders was no standing or walking for 2 weeks. He is really starting to feel back to himself again. He actually went swimming yesterday and had such a great time. I am so glad he is feeling better and back to his happy self.
May 26, 2016
I can’t tell you what a gift it was to be co- chair of The first annual fundraiser kick off party. Thank you so much coming out and having a fun time. The Perrino Family has warmed many hearts . Although the party is over the fundraising continues.