A family's challenges and triumphs

Words like ventriculomegaly, DeSanto Shinawi Syndrome and hypotonia are typically medical terms which tend to confuse and panic the general public.
Caitlin and Joseph Piccirillo are young parents and residents of Vernon. They had to bravely confront those words when their son Leo developed ventriculomegaly in utero. Doctors noticed that Leo’s brain ventricles were enlarged and were allowing water to collect and possibly cause developmental problems. After a normal, non-incident birth, Leo was diagnosed with DeSanto Shinawi Syndrome at four months when his parents noticed the rare genetic disorder’s symptoms characterized by developmental delay, low muscle tone, hypotonia, behavioral problems, intellectual disabilities, gross motor delays and seizures.
The disorder is relatively new, discovered only in 2014, with very little known and little research so far. Leo’s case is the only one in New Jersey and Morristown Hospital has never had a case before Leo’s.
Stoic and steadfast, the Piccirillo family, along with dessh.org, the disorder’s website, has organized a fundraiser in Vernon. On Saturday, April 27, a Dash for DESSH will take place in Maple Grange Park in an effort to raise funds for awareness and general research.
A musical concert is also in the planning stage for June 1 at St. Francis de Sales Church, featuring local volunteer performers.
Currently, there is no cure for DeSanto Shinawi Syndrome, however, the best treatment in multiple therapy. Leo receives physical, occupational and speech therapy plus Leo also attends a full day pre-school program.
Leo’s parents, Caitlin and Joseph, are always positive and optimistic and extremely proud of their little boy. He seems to have come a long way but needs to go so much further.
“I often thank God for giving me the gift of caring for Leo,” Caitlin said.