We care about your privacy. Read about your rights and how we protect your data. Get Details

Cold Treats and Warm Hearts for Robby

150 Stories Robby

Robby and his mom, Caryn, had a special tradition following his treatments at Children’s National Hospital: stopping on the way home for ice-cold slushies. The sweet treat soothed his pain and nausea. It also provided critical calories and fluid. Robby once told his mom that a slushy was “better than any pain medicine.”

Robby was 16 when doctors diagnosed him with antiphospholipid antibody syndrome, a rare autoimmune disease causing excessive blood clots. A team led by hematologist Dr. Michael Guerrera helped Robby and his parents manage the disease.

 

Robby graduated from high school, earned his black belt in karate and enrolled at Temple University, despite hospitalizations and chronic pain. The disease took an aggressive turn during his freshman year. He started new treatment, with steroids and chemotherapy. He insisted on returning to school, despite the challenging side effects.

 

Sophomore year lasted only a few weeks before the disease forced him to return home. Experimental treatments followed a month-long stay in our pediatric intensive care unit. Our PANDA Palliative Care team, which helps families cope with complicated medical problems, arranged for some fun after his release. Robby dreamed of driving a Corvette. At a local dealership, Robby enjoyed a test drive of the newest model. He led a thrilling parade with dozens of other Corvette owners around Clarksville, Maryland.

 

“We didn’t just have medical professionals taking care of our child,” Caryn recalls, “we had people who were emotionally connected and authentic.”

 

Robby passed away in 2016, just after his 20th birthday. Gifts raised in his honor paid for the installation of an ICEE machine in the Ronald McDonald House family room at Children’s National. Caryn visits on his birthday to give out ICEEs to patients on the fourth floor. “Robby would have loved this, especially knowing that it made people smile and feel better,” Caryn said. “It captures his spirit and the spark that was alive in him.”    

Invest in future cures for some of life's most devastating diseases

Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you.

Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you. Make it happen