NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Riley Cerabona, by her mom, Kristen Davis.
Our daughter Riley is a brave and resilient ten and a half year old who loves animals, her friends and family, drama and singing and playing outside. She lives with her three cats, one dog, older brother Cole and parents in Kennebunk, Maine.
When I was 18 weeks into my pregnancy, a routine ultrasound showed that Riley had a lymphatic malformation in her chest and armpit. The pediatric surgeon in Maine had no experience with this type of vascular anomaly, so we did some research to find the person who could best help our baby. The search led us to Dr. Steven Fishman at Boston Children’s Hospital’s Vascular Anomalies Center.
Under the care of Dr. Fishman and his amazing team, Riley had the malformation and overgrowth removed at just three months old. Unfortunately the lesions continued to grow in and on the outside of her body, and she developed many complications related to the disease that she would eventually be diagnosed with. The Vascular Anomalies Center team did a great job caring for Riley, but weren’t fully sure what was causing the new malformations. (At the time, CLOVES was so rare it hadn’t been identified by doctors yet.) As she grew she needed more surgeries and medical interventions. At just ten years old, Riley has had 16 surgeries, 40 MRIs and countless hospital visits.
By the time Riley was five years old, Boston Children’s researchers had identified CLOVES as a specific syndrome, and she was diagnosed with it. It’s a progressive and very rare condition, affecting only about 100 people worldwide. She was also diagnosed with Type One Diabetes, and is on an insulin pump. We travel to Boston Children’s Hospital a minimum of once every three months, and sometimes we go to Boston several times a month. There she receives all of her specialist care, as the coordinated care that she needs is not available in our home state. Our family is so very grateful for the level of care that Riley receives at Boston Children’s.
Research into rare diseases and non-surgical treatments is also important to our family. Riley recently took part in a 48-week clinical trial of a drug called Sirolimus at Boston Children’s Hospital. The intent of this drug is to slow or stop the growth of the lesions/complex vascular anomalies that Ri’s body keeps growing. After a very stable year, Riley is continuing this medication under compassionate use.
We are excited to participate in Family Advocacy Day so we can meet other families and children who are positively impacted by the coordinated care they receive at children’s hospitals, to share our story and to hear the stories of others and to advocate for the needs of children like Riley.
For much more on Riley and her family, check out this series of NPR stories.