"Failure to Thrive." These three words have shaped so much of our lives since 2012 when Ryan was first sent to Boston Children's Hospital. It was shortly after his first birthday when he was given this label because he wasn't gaining weight or reaching his developmental milestones. At first Ryan was eating non-stop but his body wasn't utilizing the food properly. He required more than the normal amount of calories and an NG tube had to be placed for supplemental nutrition. Beyond the struggle to gain weight, Ryan's body began to break down, with simple everyday activities becoming a challenge. It was clear to every doctor that something was not right and his body was in constant overdrive, burning more calories than he could ever take in on any given day.
After years of tests, assessments and surgeries, we just received Ryan's diagnosis. He unfortunately was diagnosed with Mitochondrial DNA Depletion Syndrome, for which right now there is no cure. This is a chronic, progressive, and even terminal disorder. This is a disorder that affects his mitochondria and in Ryan’s case he only has 40% of what he needs. This means that the "batteries" of Ryan's cells throughout his body are working overtime, requiring him to need many more calories than the average child. Over time, this constant need for food has made eating a difficult chore for Ryan, consuming much of his day. He continues to receive supplemental tube feedings for extra calories while he sleeps in order to help him to grow. He will soon have a more permanent G-tube placement.
Despite all these challenges, countless appointments and feelings of being different from other kids, Ryan has an unbelievable zest for life! He's a little boy who's passionate about his family and friends, Tom Brady and the Patriots and anything related to penguins. You will always find him with a huge smile on his face and ready to take on anything!
Boston Children's Hospital has been there every step of the way throughout Ryan's life. We have been blessed to have such a wonderful team of doctors so close to home who are all deeply vested in Ryan's care and treatment. This amazing place gives hope to so many kids and families and we feel privileged to have an opportunity to raise funds to help heal, support and find cures for every child that comes through its doors.
We're fundraising on behalf of Boston Children's Hospital because:
WE BELIEVE no parent should experience the loss of a child.
WE BELIEVE no sibling should have to watch their brother or sister suffer.
WE BELIEVE that by investing in the best doctors and scientists we can save lives - today!
WE BELIEVE that donations received before today helped a child we love and
WE BELIEVE that every dollar we raise for Boston Children's Hospital will have a ripple effect and could be THE dollar that changes everything for a future family in crisis.
Please consider a donation to support our fundraising efforts... because WE KNOW that when we band together, WE WILL help fund Boston Children's exceptional care and groundbreaking research that can help every child.
Support the hospital by joining our team or making a gift to one of our team members.I'm fundraising on behalf of Boston Children's Hospital because: