The Radel family has been a part of the Down Syndrome Program at MassGeneral Hospital for Children (MGHfC) for the past six years. During this time, 15-year-old Mark Radel has worked with program director, Brian Skotko, MD, MPP, and his team. The family is deeply grateful for the care they receive at Mass General, and they make a recurring gift to the hospital every month.
Learning that your child has Down syndrome is a “flash-bulb” moment — you never forget who told you, where they told you, or how they told you. Your life is now divided by a bright line — your journey before, your journey after. To the worries and wonders experienced by all new and expecting parents, you add bigger, more urgent questions — will my child learn, make friends, live a life of meaning, independence and fulfillment?
When you feel the weight of the newborn in your arms you feel an extra weight of responsibility because you know this child’s special needs will require you to find answers, solve problems and go beyond what you thought you could do. And you know you cannot do it alone.
We began our Down syndrome journey in February of 2006 with the birth of our second son, Mark. We were fortunate to have a strong network of family and friends who embraced Mark and supported us as we learned to live with our new reality and process how Mark’s diagnosis was to change our lives.
Our journey has been, in some sense, less dramatic than we expected. Mark experiences his life — and participates in our lives — in many ways typical to a teenager: he wrestles with his brothers, plays with “Buttons” (our new puppy), loves his chicken tenders and cheers for his Buffalo Bills and Boston Red Sox. He prefers lunch and recess to algebra and global studies. And you’re likely to find him texting a friend while rocking out to the latest “Maroon 5” hit on his iPhone.
At the same time, Mark has significant medical, developmental and educational needs that require attention, effort and planning in the short and long term. We cannot meet those needs on our own — when you support a person with special needs, you need special partners.
Although we have been fortunate to find some caring medical professionals near our home in upstate New York, there is no substitute for genuine expertise from committed providers focused on, and leading the world in, Down syndrome research and care.
This is why we are so grateful for Dr. Brian Skotko and the Down Syndrome Program at Massachusetts General Hospital. We know our annual visit to Boston will give us the most accurate, reliable information about Mark’s health and guide us toward the best practices for supporting Mark’s growth into a healthy, happy adulthood.
We are encouraged by the program’s world-class research and ongoing commitment to creating better outcomes for people with Down syndrome. We are grateful for the obvious concern, compassion and dedication of Dr. Brian and his team. As active members of our local Down syndrome support and awareness group, we have been honored to have Dr. Brian speak in our community, and we encourage other families to visit the Down Syndrome Program.
After the “flash-bulb” delivery of the diagnosis, your new journey begins. We appreciate the special blessings but acknowledge the special burdens. We cannot make the trip alone. No one should. Our family is fortunate to have Dr. Brian Skotko and the Mass General Down Syndrome Program with us on this journey. We are proud to support their work and help them partner with more families on journeys like ours. We hope you will consider joining us in supporting the Mass General Down Syndrome Program.
— Patrick, Mary, Luke, Mark and John Paul Radel (and Buttons!)