Remy's Arthrogryposis Conference

Hello Family and Friends! Most of you know Remy and his story but for those of you who dont let me introduce you. Our beautiful Remy was born 9-12-14 with a rare condition called Arthrogryposis Multiplex Congenita or AMC for short. This is a condition that affects the nerves muscles and joints. In Remys case it affected his arms, fingers, and wrists the most, his shoulders and left foot more mildly. He had very little movment of his arms when he was born unable to bend his elbows or properly use his fingers and wrists. His left foot had what they call  Congenital Vetical talus deformity or Rocker bottom for short.

As of today our boy has made fantastic progress with casting for the foot, and now braces he wears 20 hours a day. His arms, fingers and wrists have responded beautifuly to theraphy and now with his right arm he can feed himself, and maneuver his sippy cups. Both his shoulders function beatifuly enableing him to crawl and play. His left arm still does not bend and March 8th he will have his first surgery at The Shriners Hospital in Philadelphia to help  that arm  function more normally. Having to travel to Philly every 4 to 6 months and the March surgery is costly in hotel stays. We also need a new van and some major house hold repairs. Last year we went to the AMC conference in FL and had to choose between these major houshold repairs and going to the conference. We choose conference feeling it best for Remy. This conference was one of the most beautiful heart warming experiences Ive had in my life. We learned a lot from the different seminars we attended and just as importantly we made connections to people and familys with kids like Remy. We came home with many new ideas on ways to help Remy and many new friends who with the common bond of AMC really feel more like family.  This year the conference is in Tulsa OK From July 6 - 9 and we just can not put aside getting a van or these house hold repairs any longer.

 So yes as humbling as it is Im reaching out with go fund me to have a chance to get there. This money will be used for flight, hotel, and food costs for Sean, Remy, and myself and any donation is HUGELY GREATLY appreciated. I plan on buying a plain white t-shirt for Remy in which I will write 'Remy's Sponsors'  and anyone who donates can leave a message I will write on the t-shirt or if you are able to connect to me and write on it yourself that would be cool too. Thank you  so much for reading our story and helping us get to the conference.