TAMPA, Fla. (WFLA) — A Tampa Bay area toddler who was born with a rare blood vessel abnormality inside his brain traveled with his parents to Washington D.C. on Tuesday to meet with lawmakers to advocate for better health care for medically complex conditions.
Luke Calcines, 3, of Tampa joined dozens of other children from around the country, who are also dealing with rare conditions, to encourage Congress to safeguard health care coverage for kids.
“We really are excited to be able to advocate for them and speak and share our story so that others can understand how much we have to go through as medical families,” said Luke’s mother Emily Calcines.
At just two days old, Luke was diagnosed with a rare blood vessel abnormality inside the brain known as Vein of Galen Malformation. According to St. Joseph’s Children’s Hospital, where he received care, the condition is a massive tangle of blood vessels that cause a super highway of blood flow, putting major stress on the heart. As a result, he was in critical heart and respiratory failure immediately after birth. He spent the first nine months of his life hospitalized and has undergone five surgeries to correct blood flow through the malformation.
“At one point, we didn’t know whether he was going to be talking, and you know, he was on life support for a few days, so there was a lot of side effects with like listening, hearing, but he’s great, he’s running around with his friends, he’s saying more words everyday,” said Luke’s father Gabriel Calcines.
News Channel 8 was at Tampa International Airport as Luke and his family took off to travel to Washington D.C. as part of the Children’s Hospital Association’s Annual Family Advocacy Day.
St. Joseph’s Children’s Hospital and the family will be urging lawmakers to advocate for legislation that would improve how care is delivered to America’s medically-fragile children, like Luke.
“It’s important for members of our congressional delegation, as well as our senators to hear from Luke, and Emily and Gabe, and other parents and pediatric patients, about what their day-to-day lives are like,” said Jason Rodriguez, Director of Government Relations for BayCare Health System. “We are advocating for increased support for our workforce, particularly specialties that help care for medically complex kids.”
Luke’s family will meet with U.S. Representatives and Senators, take a tour of Washington D.C. and take part in a celebratory dinner to honor the children and their families.
“To share his story and advocate for the needs of all the children in Florida and Tampa Bay,” said Emily Calcines.
