A Message From Tucker 5/17/2015:
Hi. Thank you for reading this. And thank you for being a part of Tee Off for Tucker. For 3 years I have been shocked at all the people who have come to our tournament. It makes me very happy inside and also gives me a new reason to fight harder.
I sometimes would get frustrated because of my constant pain. But because of a few reasons I know that I cannot do that. I need to be strong and I need to be positive. One reason is my Dad. He is my hero. He suffers everyday like me. He is very strong. He fights hard every day and so can I.
Another reason is because of Phil, Dana, Susie and all of you. You are here because you believe in me. And that inspires me. I remind myself that I am actually very lucky to have so many friends.
The last reason that I know I have to be positive is because I have a sister and a brother that also have been diagnosed. And I need to show them that we can do this together. I get my infusion this week with my sister for the first time at Boston Children’s Hospital. So I do not have to go through them alone, and neither does she. I hope that Tee Off for Tucker makes them feel the same way inside that it makes me feel. They need to fight through this now too.
I love you Logan. I love you Cooper.
Thank you very much.
August 2014 Update:
Tucker’s latest appointment at Boston Children’s Hospital was a trying one for Tuck. Unfortunately due to excessive pain his Rheumatologist ordered scans. The scans unfortunately showed progression of the spondyloarthropathy. Due to his former treatments making him sick, as well, as no sign of the disease slowing down with that treatment path, Tucker begins infusions in Boston on August 13th as well as two other meds at home. Although this visit proved extremely difficult for Tucker, he is resilient and is going into his first infusion with much hope for a more positive treatment path and results.
Tucker and good friend Connor
Tucker’s story began with a limp getting off the school bus and progressed each day a little worse. An extremely positive 7 year old at the time, one who rarely, if ever, complained. Within a few short days he no longer could get himself out of bed. After a few months of doctor visits, tests, crutches, operating room aspirations the diagnosis was clear – Ankylosing Spondylitis (AS).
This disease, which progressed from one hip to both hips, ankles, and many other joints within 7 months of being diagnosed has proven to test this young boys resilience. Frustration, confusion and a tremendous amount of pain accompanied the diagnosis but with intense therapies, meds and treatments he is able to function much better. The bad days are definitely still there, but Tucker is grasping on how to react and what to do on those very days.
Tucker has heard ‘there is no cure’, ‘we need to learn to cope with the pain’, ‘you will never play football again’ – all negative and to a young athletic boy pretty sad and scary. But it was in September of 2012 that the first Tee Off For Tucker Golf Tournament was held. And with that day came a new sense of confidence, his parents said. Tucker went from not wanting to hear the words Ankylosing Spondylitis to asking how to spell it. He attends Arthritis Foundation Events, has given a presentation about AS at his school, and wears his Arthritis t-shirts with such pride.
In April of 2013 Tucker’s father Tony was also diagnosed with AS. Tony’s disease is very advanced with much of his spine, neck and ribs already fused. But it is Tony who gives Tucker his positive attitude and will continue this fight right along with him. When asked about Tucker’s diagnosis, Tony was often heard saying, “Well we have to fight through it and there will be no feeling sorry for ourselves!” They have a fight on their hands, but one they will fight with a great attitude and unheard of determination.
We cannot take away their pain, but we can fight along side them. Please join us.