Matty was born healthy to eager parents and a proud big brother, but started to experience seizures at increasing rates and severity at age three. After a year-long journey of specialists and genetic testing, Matty was finally diagnosed with CLN2 disease and his family immediately went into research mode, seeking out advocacy organizations and connecting with other families.
“The CLN2 families that have come before us have been a huge inspiration to us. Without these families working with BioMarin and other researchers, Matty’s treatment never would have come to fruition.”
Q: Tell us a little bit about you and your family.
We are a family of five, including our dog Brady. Logan is 13 and Matty is 11. We live in New England and love Boston sports. Logan is active in music and sports and enjoys reading to Matty or helping him play Angry Birds on his iPad. Matty loves his music, Pixar movies, monster trucks and minions.
Q: How do you like to stay involved in the CLN2 or rare disease communities?
Social media has provided a powerful link to the rare disease communities. It enables us to check in on all of our friends affected with CLN2, as well as keep up to date on the latest scientific news. Our biggest connection each year is through the BDSRA Annual Conference. We love seeing all of our CLN2 families.
Q: What makes you as Matty “rare”?
What makes Matty rare is that, despite all the traveling, all the appointments, all the needles stuck in him, etc. he still enjoys every day of his life and helps brighten others’ lives as well.
Q: Name someone who is an inspiration in your life and tell us why.
The CLN2 families that have come before us have been a huge inspiration to us. We are truly amazed by the families whose children have lost their battle to CLN2, but they continue to forge ahead, supporting others, raising money on behalf of Batten Disease, and fighting for rare disease in general.
Q: What is your favorite book and why?
The Gruffalo has become one of the favorite books of our family. We have read it to Matty so many times that Joe, Logan, and I have all memorized it and no longer need the book to recite it to him.
Q: What’s the best piece of advice you’ve ever been given?
In times of trouble, if someone offers you help, let them help you. It is not only good for you, but it helps them cope with the situation as well.
Q: If you had to pick one song to be the theme song to your life what would it be and why?
“Everlasting Light” by the Black Keys has always been one of Matty’s favorite songs. We have been lucky enough to be surrounded by people who have brightened our lives and supported us when times have been difficult. Most importantly though, our boys are our everlasting lights.
Q: Tell us one goal you look forward to working toward accomplishing in the next few years.
Our day-to-day focus is on our family and it does not leave us much time for other things. We would like to be able to contribute more to the Batten community by fundraising or connecting with other new families to help them adjust.