against all odds
When Leo D’Orazio was four days old, his parents, Dan and Brandie, learned devastating news. Despite a healthy, full-term pregnancy, their baby boy was born with a rare genetic brain disorder. Because his brain stem was underdeveloped, he would be unable to see, hear or even breathe on his own.
Doctors said Leo had little time left. He was baptized in the hospital, and family and friends gathered to offer the support the family would surely need in the coming hours. Dan and Brandie held and kissed their tiny baby goodbye as his breathing tube was removed.
From Hours to Days
Against all odds, Leo kept breathing. The minutes turned into hours, and then days. Soon, Dan and Brandie were able to take him home, where the family would receive care from Gilchrist Kids. “The doctors said he would probably die at home within a few days,” recalls Brandie. “The scariest thing was not knowing when.”
A Gilchrist Kids nurse, social worker, child life specialist and chaplain teamed up to provide not only medical care for Leo, but emotional support for the whole family. Leo’s siblings, Stella (8), Anna (4 ½) and Luca (2 ½), are adjusting to Leo’s illness with the help of their child life therapist, who uses art and play therapy to work through their emotions and questions. And when Brandie needed time to recover after a surgery, Gilchrist was there to offer inpatient respite care for Leo at Gilchrist Center Baltimore, giving her a much needed break from the constant demands of caring for a medically fragile child.
Brandie turns to her faith in dealing with the uncertainties to come. “It’s totally in God’s hands…All I can do is take care of him.” She says Leo has changed their family’s perspective—made them more thankful, humbler, and stronger.
He has also made a lasting impact on the Gilchrist team who cares for him. “Everyone on Leo’s journey has grown together,” says Julie Ward, his Gilchrist nurse.
Having the Gilchrist team has helped the family learn to live in the moment, focusing on enjoying the time they have with Leo rather than worrying about how long they may have left. To Dan and Brandie, the care that Gilchrist provides has been invaluable. “Gilchrist is such an important part of our lives,” says Dan. Brandie agrees, adding, “There is no way we could have gotten through this past year without Gilchrist.”
Leo celebrated his first birthday in January, a moment no one thought would come. “We went from a prognosis of only a few days to a few weeks, to preparing for a huge birthday celebration,” says Leo’s nurse, Julie. “Leo is such a special child and he has an amazing family full of love.” The family is donating Leo’s birthday gifts to Gilchrist for other children receiving hospice care.
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