Friends, Family and Strangers Alike:
Looking at this handsome, active five-year old you'd never guess the journey that this little boy has faced over the last twelve months. It's an experience that most of us will never have to encounter and rightfully so, one that we would never want to tackle either ourselves or as a parent. It is my hope that after reading his story below, you will join me in helping to make the days ahead a bit brighter for my little superhero Samuel Agusta and his amazingly strong mom, Tiffani.
From the outside, Sam's your average five-year old. He loves his cars, Legos, and any super hero that can fly, skip or jump:.and save the day. His Teenage Mutant Ninja Turtles go everywhere with him these days and if you ask him who his girlfriend is, he'll proudly tell you her name is Sara. He has lots of friends "“ Dylan, Cameron, Caden and Brady to name a few "“ and most importantly, a big family who loves him unconditionally.
If you know Sam (or even if you don't), you'll quickly learn that he's always been known for his big belly. Even he would tell you he has a big belly (naturally full of cookies, of course!). Last January his belly started to grow, large enough to the point he began to appear more descended than usual. His inability to have a bowel movement, coupled with extreme discomfort and an increasingly distorted abdominal area prompted a visit to a pediatric gastroenterologist at Golisano Children's Hospital in Rochester, NY. It was here that his journey began and his brave fight to "be like all the other kids" would quickly become a reality.
Since his first hospital stay, Sam has had just as many trips to the Emergency Room as he has fingers on his hands. He's endured close to 100 enemas administered to his little body and at the same time, just as many suppositories. Add to that countless hospital stays, rectal exams and painful surgical procedures which in almost all cases have resulted in a false/positive conclusion.
The health issues Sam is facing have baffled the minds of his team of doctors here in Rochester. After a number of inconclusive tests and his body's lack of response to prescribed treatment methods, Sam was referred to the Children's Hospital of Boston in August 2013 for further testing and prognosis. Since his initial visit, Sam has undergone multiple rectal biopsies and invasive procedures to rule out all possible digestive disorders. Exhausting all options, doctors most recently were faced with two final options for permanent treatment of his condition, both of which required major surgery. After an unexpected seven day hospital stay at Golisano Children's Hospital in late January, a final decision was made for Sam to undergo a pediatric cecostomy / posterior anorectal myectomy.
On Tuesday, February 11, 2014 - one day after his fifth birthday "“ Sam tackled his biggest hurdle yet and underwent invasive surgery at the Children's Hospital of Boston. After five hours in the operating room, Sam was wheeled out a true superhero with a brave face and a "MIC -KEY" tube (port) implanted in the side of his belly. It is the hope of his team of doctors in both Rochester and Boston, his family and his friends that this device, which will assist in flushing his intestinal tract daily, will be the "miracle cure" to his disorder. Success rate of this procedure is high; however should this not work as intended, his only alternative will be to undergo a colostomy that will require a "bag" to be permanently worn for the rest of his life.
Given the health conditions Sam has faced, some days are good and some days are bad. Weeks here and there are a struggle, while others are seamless. Sam lives his life with a smile and a contagious laugh though, a smile that could brighten anyone's day and a laugh that will make you laugh. As if his colorectal issues weren't enough, he was diagnosed with autism in mid-2013. Although considered to be high-functioning on the autism spectrum, intense physical, occupational and speech therapy are required on a daily basis to assist in coping with the developmental delays he continues to have ahead of him.
As you can imagine, the health issues that Sam has endured over the last twelve months have brought with them a growing number of co-pays, travel expenses and increasingly large medical bills to his mom, my dear friend Tiffani. His journey will not end here nor will the expenses. Doctor visits and routine trips to Boston Children's Hospital are in his future and with that, added medical costs and the potential for any additional care that may be required. Should we surpass the goal I have established, extra funds will be set aside to cover expected future expense. Whether you open your heart or your hand, a donation of any amount will be appreciated more than you may ever know.
Throughout this journey there is one thing that has and will continue to remain constant: Sam and Tiffani will never give up. Ever. In his eyes, Sam will tell you "I'm Samuel Leon Agusta and my favorite turtle is the blue turtle." In his mom's eyes, he is a very special little boy who just needs a little extra help. To me and to all of you, I think it's fair to say he is and will always be our real-life superhero.
With much love and many blessings,
Personal Friend of Tiffani and Sam
- JoAnn Thayer
- brad carrier
- carmine iorio
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