Together for Tristan

Being a special needs parents is a roller coaster. You are never truely prepared for what lies around the next bend, but you are always willing to face it head on because this is YOUR child. When Tristan was 4 months old he was diagnosed with epilepsy, then at 5 months we learned he had spastic quadriplegic Cerebal Palsy caused by a stroke which occurred before he was even born. Tristan is wheelchair dependent and needs help with all his activities of daily living. He is non-verbal but has a smile for miles. Talk about never being given a fair chance- But if you know Tristan, then you know the true joy that he brings to this world, friends, family, and anyone lucky enough to know him. As our first child, my husband and I have honestly never known any different than providing for his needs and trudging head first into whatever struggles lie ahead to keep Tristan at home. For us there is no other option.

As we have gotten older, and Tristan has gotten bigger, we began the process for home modifications for him, including his special bathroom. I started the ground work and got the ball rolling. We have had contractors stiff us after finding out what we needed, gave us false hope saying they'd love to help, and never hear from them again. We have been told we are to far from Rochester or to far from Buffalo to even be considered. Tristan is in need of a medical bathroom renovation, which many normal contractors and businesses do not offer, as it's a special project.

After over a year of trying to find a contractor who would work with the state funded program, we finally had found a firm who assured us that they would see it through. Plans were drawn, stamped by the state required architect and submitted to slowly float through the sea of red tape known as New York state. Fast forward to today, which even this morning we naively still gripped onto the false sense of being another day closer to the finish line... and yet by the afternoon we received word that the contractor had decided that they were no longer interested in the project and were withdrawing their proposal. In an instant we have found ourselves back at square one, left with arduous 2 year process set to begin again. Time to wave the white flag? Yes, indeed we are. We are no longer going to rely on the "Process" as it has indeed failed Tristan repeatedly. Instead we hope to band together with all of you who know and love him for who he is, and do not see him as a case # on a form.

Chris and I have both hurt ourselves TRYING to give Tristan a bath. He's 125 pounds of "dead weight" and almost 5 ft tall, its not easy.

EVERYBODY deserves to be bathed, and SAFE in the process. Tristan deserves a warm shower just like anyone else. And this is absolutely heart breaking and not fair.

Chris and I have fought for him since the day he was born, to get him everything he needs. And we will continue to do so. We have always prided ourselves at being those who offer to help, as we are very active in our community. We don't ask for help. Today we are setting that aside because for Tristan, we'd do anything. Any support is appreciated more than you know, if you aren't able to help, please share.

LETS DO IT TOGETHER, FOR TRISTAN