Meet Frankie, age 9

Sharing his champion spirit

At 9 years old, Frankie is the oldest of three boys and is very proud of his “big brother” role. When asked he replied with, “I like to teach my little brothers how to play football and to practice good manners.” Frankie adores his family and loves spending time with his two younger brothers, Brennen and Thompson – playing and enjoying life just as little boys should.  Frankie is an avid Pittsburgh Steelers’ fan, and his dream is to play in the NFL one day.

From the beginning

It was during a swim meet in 2019 when Frankie’s parents, Colleen and Paul, noticed a change in Frankie’s movements; he was dragging and struggling to lift his arms out of the water. Not long after, Frankie began complaining of sensations of weakness and shoulder pain, and it was at this point that his family practitioner referred Frankie to Dr. Harper, a neurologist at Children’s Hospital of Richmond at VCU. Under Dr. Amy Harper’s care, Frankie underwent a series of scans and testing that ultimately led to the diagnosis of FSHD Type-2 muscular dystrophy also knows as Facioscapulahumeral muscular dystrophy. This form of MD is incredibly rare in children and is a genetic muscle disorder primarily affecting the upper body including the arms, shoulders and face. To support and prolong his strength, Frankie is seen by the neuromuscular team at CHoR and attends routine physical and occupational therapy sessions.

Not long after Frankie’s diagnosis, his aunt began referring to him as “Fearless Frankie” because of his fearlessness in facing everything that he does. The vision of what Frankie’s future holds is unclear, as there is no cure for FSHD and no timeline to follow in terms of expectations. But this uncertainty has not allowed Frankie and his family to stop them. The Ferriera family chooses to live each day to the fullest, taking advantage of every opportunity to enjoy the both the big and small joys in life. Frankie chooses to play football and swim competitively because it brings him joy and because today, he can. He also hosts a very special lemonade stand with his family and friends as a way to give-back to local causes they care about.

As a result of Frankie’s passion, the Ferriera family has quickly become passionate advocates and fundraisers within their community. Their goal: to help fund research and support clinical care for kids like Frankie – working towards answers and treatments for a life filled with hope and positivity.