Mary Therese Rose Crilly was born on January 28, 1998 at the Valley Hospital in Ridgewood, New Jersey. She was warmly welcomed by her parents, her sisters Gina and Alycia, and her brother Matty. A few days after her birth, Mary was diagnosed with a rare genetic disorder called Joubert Syndrome, which affects only a handful of children around the world.
Mary's case of Joubert Syndrome was extremely severe. The doctors at Valley have never before diagnosed a patient with the disease, and Mary's situation was one of the most complicated. Thus, their expectations were not high, and the doctors hoped she would live at most a few months. Mary and her family lived beyond such expectations, however, and for nearly five years celebrated Mary's inspirational life.
Joubert syndrome affects different parts of the brain. Because Mary's case of Joubert affected her cerebellum, she was unable to walk, talk, eat, or even breathe on her own. Also, she was blind in one eye and suffered from a serious liver condition. Despite all of her limitations, Mary was always joyful. Her brilliant blue eyes and breath-taking smile enriched people's hearts and souls.
Mary always lived her life to the fullest. The Crilly family never allowed her disability to interfere with, as quoted from the fund's brochure, "the joys of childhood". Mary went swimming, went on vacation, and even went horseback riding. She went on walks with her mom, sisters, brother, and her nurses almost every day. She also attended concerts, went apple picking, and even went on a few rides at the local carnival. Mary was always seen with a smile on her face as her family enabled her to enjoy her childhood.
Mary Therese Rose Crilly died on January 12, 2003, just weeks before her fifth birthday. It was with great sadness that her life ended, but with great comfort that she is still living through our hearts. Even in death, Mary's memory continues to inspire others each and every day.
The Mary Therese Rose Fund, established shortly after Mary's birth, is spreading the happiness that Mary had on earth to those children that could also "reclaim their joys of childhood". It is with great joy that Mary could spread such happiness, even after her death. As each child is able to enjoy the simple pleasures of childhood and life because of the fund, Mary's beautiful smile spreads from face to face. It is these smiles that will forever keep Mary's life a celebration of love, joy, hope, simplicity and happiness.
One of the many activities that are funded includes the Saturday Stars. This allows kids to participate in dance, sports, yoga, as well as arts and crafts.