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Team Julian Revisited: A Family Is Changed Forever

Brooke Connell & her son

Last year, in our October 2012 issue, Quest met Julian Falleta and his family. Julian was 10 years old with hemophilia A, and the family had not been told about prophylaxis treatment. (This is care that involves regular infusions of factor to help prevent bleeding.) The family also didn’t know that a Coram nurse could come to their home to provide regular nursing care to Julian. At that time, Coram Consumer Advocate Frank Garcia had just started working with them. His goals were two changes to Julian’s care — prophylaxis and in-home nursing care.

As a result of Frank’s efforts, he changed Julian’s life. He also changed the lives of Julian’s mother, Natalie, and his grandparents, Evelyn and Dominick.

“Frank got us on this road. It’s just amazing the difference it has made,” Dominick says. “Before we had prophylaxis, we would take Julian to his primary doctor whenever he got bruised up. We thought that was the thing to do. Now the Coram nurse, Rich, comes regularly to care for Julian. He’s a godsend. He takes such good care of Julian.”

A Richer Life

With the changes in Julian’s therapy have come changes in his life. One of the biggest differences over the past year is Julian’s level of physical activity. Before, Julian had to watch from the sidelines while his friends took part in gym class. Now he is not only taking part in gym class, but also plays on the playground. This change has led to improvements in his social life as well.

“I have more friends now in middle school,” Julian says. “I used to go to the YMCA [for an after-school program]. I had friends there, but they were all from different schools. Now I can play on the playground and do gym with my friends from school."

“We have more peace of mind with Rich coming regularly,” Dominick says. “He takes care of Julian as a nurse. And not only that, he has been teaching Julian [with his doctor's approval] about what he can and can’t do with hemophilia.”

Julian and Dominick have always had a special grandson/grandfather relationship. Recently, that has expanded as well. While they used to just play catch at home, over the last year they’ve gone fishing on a charter boat three times. Previously, concern over injury away from home had kept them from doing that kind of activity. Now, fishing is a new way for the two to enjoy themselves together.

“Julian showed me how to put the bait on the hook,” Dominick says proudly. “And two of the times we went, he caught the first fish. We had such a good time.”

Family Vacation

Last December, Julian went on another adventure that he could not have imagined before prophylaxis. The family went on vacation to Florida. They went to Disneyworld, Marineland, and other theme parks.

One day, Julian and his family went to a park on the grounds of the hotel where they were staying. There, Julian met a boy on the swings. They started talking, and the boy told Julian he had hemophilia B.

“Julian was shocked at first,” says his mom, Natalie. “He had never met another boy with hemophilia. We’re hoping they can be pen pals.”

Julian Gets His Bike

Perhaps the most symbolic change over the last year was that Julian finally got the bicycle he had wanted. Before the prophylaxis, the family had been too concerned for his safety to give him a bike. To ride the bike, of course, he had to agree to wear a helmet, kneepads, and elbow pads. This would help protect him from head or joint bleeds.

“That bike,” Dominick says with a laugh. “I ended up getting four of them. The first one didn’t work for him and the second one was too high. He didn’t like the color of the third one. But the fourth one was the charm. The salesman just shook his head every time I came back."

What’s best for Julian these days is a newfound sense of freedom. With Coram Consumer Advocate Frank Garcia and Nurse Rich Cito added to Team Julian, the entire family is enjoying their life together and watching Julian thrive.

Julian, Dominick, and his Coram nurse, Rich Cito.
Julian with his grandfather, Dominick, and his new bike.

Excerpted from Quest, Coram's magazine for hemophilia consumers.
Dec. 2013, Issue 30

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