"I am deeply grateful that his therapists have taken the time to understand him. They recognize his strengths and help him build on them. They have welcomed Diego, Allison, and me as part of the team, so that we can support Christopher together."
Every child with Down syndrome has a unique journey, and Christopher’s story is one of growth, progress and the importance of personalized care. Through years with Children’s Specialized Hospital, Christopher and his family have access to specialized care and support designed to help him reach his full potential. Read below to learn more about how CSH became part of Christopher’s family.
Can you tell us a little about Christopher and your family? When did you find out he had Down syndrome, and how did you feel learning the diagnosis?
Our faith has always been at the heart of how we love and care for one another. When we learned we were expecting Christopher, the world was in the middle of a pandemic. Allison, Christopher’s sister was still very little, and his brother, Theodoro, was nearly 18. Prenatal care felt different and more uncertain than we had imagined.
About four and a half months into my pregnancy, we received a phone call telling us there was a 92% chance that Christopher would be born with Down syndrome. I immediately called my husband, Diego, and my mother. In that one phone conversation, the three of us were completely united: we believed God was sending a gift into our family.
A week later, we learned that Christopher’s heart looked perfect. We also learned that I was at risk of losing the pregnancy and needed to remain in the hospital until he was born. Being away from Allison for so long was heartbreaking. My mother’s presence and support helped carry our family through that time.
I knew very little about Down syndrome then, and I asked for space to live the rest of my pregnancy in peace. I wanted to hold on to the hope that my son was coming into this world to stay.
Christopher arrived at 30 weeks, weighing almost three pounds. He was so tiny. The note on his incubator simply said that he was “waiting to grow.” He spent two months in the neonatal intensive care unit (NICU). When he was born, we learned for certain that he had Down syndrome. What I remember most about that moment is the overwhelming love we felt for him.
Today, Christopher is five years old. He is affectionate, playful, clever, and full of life. He is our son, Allison’s brother, and one of the greatest joys of our family.
How has the CSH Down syndrome Center of Excellence helped Christopher?
The Down syndrome Center of Excellence is new, so we are at the beginning of what it will mean for Christopher personally. But the moment I heard it was being created, I felt an incredible sense of joy and hope.
As a parent, I have often heard broad conversations about children with different developmental needs, while struggling to find guidance that speaks directly to the experiences of children with Down syndrome. Hearing that CSH was bringing this expertise together felt like an answer to a need I had carried for years.
I hope the Down syndrome Center of Excellence will help Christopher continue to grow in every part of his life: his health, communication, learning, relationships, and independence. I also hope it will help more families find support that truly sees their children as individuals, with their own strengths, needs, and dreams.
What’s the biggest difference you’ve noticed in Christopher since starting at CSH?
Christopher started receiving care at CSH when he was about four months old. In many ways, he has grown up here. So, it is hard for me to point to just one difference—we have had the privilege of watching him become himself, one milestone at a time.
The biggest difference may be the confidence with which he moves through the world. He tries, learns, plays, connects with people, and surprises us all the time. His progress has come from his own determination, our family’s support, and the care of a team that has believed in him from the beginning.
At CSH, we have also found something that is difficult to describe until you experience it: a sense of family. From his pediatricians, nurses, and therapists to the front desk and security staff, people welcomed Christopher with warmth, respect, and genuine care. They know his name. They see who he is.
What can Christopher do today, thanks to his therapists, that he couldn’t do before?
When Christopher first came to CSH, we celebrated the smallest steps: lifting his head, sitting up, and finding his balance. Over the years, with the support of his therapists and a great deal of effort from Christopher, those steps became standing, walking, climbing stairs, running, playing, and exploring the world around him.
Today, he communicates in many ways. He says many words, understands both English and Spanish, follows instructions, and loves connecting with other children. He is in kindergarten. He counts from one to 20 in both languages, sings, dances, and has an excellent memory. He enjoys gymnastics, ballet, and other activities alongside his peers.
Christopher is also affectionate, mischievous, and wonderfully eager to help. He loves putting things in order and takes pride in doing things for himself. We are still working together on new skills, including communication and bathroom independence, and we celebrate his progress at every stage.
I am deeply grateful that his therapists have taken the time to understand him. They recognize his strengths and help him build on them. They have welcomed Diego, Allison, and me as part of the team, so that we can support Christopher together.
What are some other goals for Christopher that his therapists are supporting?
Our goals grow as Christopher grows. Right now, we continue to support his communication, motor skills, social connections, and independence in everyday life.
For us, a goal is more than something written in a therapy plan. It might mean Christopher can tell us more clearly what he wants, join a game with other children, or do one more thing for himself. Each new skill gives him another way to participate in the life he loves.
His team helps us notice both what he is ready to learn and when he needs time to practice and simply enjoy being a child. We want him to keep growing with confidence, surrounded by people who believe he is capable.
What does it mean to your family that CSH offers the Down syndrome Center of Excellence?
It means that families like ours have a place to turn with their questions, their hopes, and their dreams.
When Christopher was born, we loved him completely. We also had so much to learn. As parents, we want to give our children every opportunity, but we cannot always know which questions to ask or where to find the right support. Knowing that CSH is bringing people with expertise in Down syndrome together gives us reassurance that we do not have to figure out every stage alone.
What touches me most is the understanding that a child’s well-being is connected to the life of the whole family. Parents, siblings, and caregivers are part of Christopher’s world. When you support us, you help us support him.
The Center gives me hope grounded in both knowledge and compassion. It tells Christopher, and children like him, that their futures matter enough for us to keep learning, working together, and imagining more possibilities.
Is there anything else you’d like to add about the program and how it has helped Christopher?
For five years, people at Children’s Specialized Hospital have been part of Christopher’s story. They have helped him learn new skills, but they have also given our family something precious: the experience of being heard, respected, and welcomed.
For almost three years, I have also had the privilege of serving on CSH’s Family Advisory Council. Through it, I have met wonderful families who, like ours, are navigating the journey of caring for someone they love. CSH has given us a place to come together, share what we have lived, and help shape care that reaches beyond physical health. It is meaningful to know that our experiences are valued and that our children are treated with respect—as individuals and as an essential part of CSH’s growth.
To every therapist, physician, nurse, specialist, Family Faculty members, and staff member who has cared for Christopher: thank you for believing in him. Thank you for celebrating his milestones with us and for seeing the boy beyond the diagnosis. The love and commitment you bring to your work have made a lasting difference in our family’s life.
I want to offer a special thank-you to Christopher and Allison’s first pediatrician. Although she left CSH a few months ago, she cared for our children from the beginning and made our family feel loved. That is a gift we will always carry with us. I also want to honor each of the therapists who is no longer at CSH but who helped Christopher along the way. You may have moved on, but the care you gave him and the mark you left on our family remain with us.
I am especially grateful to Dr. Spinazzi for the vision and dedication behind the Down syndrome Center of Excellence. And to everyone who chose Christopher to represent the Center: we are deeply honored. We see it as a reflection of the relationship of trust we have built with CSH over the years.
During Down syndrome Awareness Month, I hope people see what we see every day. Christopher is not a list of milestones or limitations. He is a little boy who loves to sing and dance, make people smile, and discover what he can do next. He has taught our family to celebrate each day more fully and to make room for possibilities we might never have imagined.
Thank you, CSH, for walking beside us. We are proud to be part of this community, and we look forward to supporting other families as this new Center grows.
The team at the Children’s Specialized Hospital Down syndrome Center of Excellence is here to partner with caregivers and to offer support and guidance. Learn more about the Down Syndrome Center of Excellence.