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URMC / Golisano Children's Hospital / Ways to Give / Strong Kids News / March 2016 / Leon, NY Family Raises $5000 for Rochester’s Golisano Children’s Hospital

Leon, NY Family Raises $5000 for Rochester’s Golisano Children’s Hospital

Golisano Children’s Hospital is fortunate to have so many grateful families donate or organize fundraisers. John Baker of Leon, N.Y., has his own spin on raising public awareness and support for a good cause: since 2012, he has taken a 40,000-pound, 43-foot-long retired fire truck to community events in upstate New York to delight children and educate parents about congenital heart defects like the one his 4-year-old son, Sean, was born with at Golisano Children’s Hospital. 
Sean Baker had cardiac surgery at the hospital when he was just two days old; he’s had two additional life-saving cardiac surgeries. John Baker and his wife, Sarah, wanted to raise awareness of congenital heart defects and raise funds for pediatric cardiac surgery research. So they formed a fundraising campaign, “Sean Baker Strong” in 2012. “Strong” refers to Sean’s bravery in the face of his health conditions; it is also a nod to the home of Golisano Children’s Hospital, which is part of Rochester’s Strong Memorial Hospital
Why the fire truck? It’s in keeping with the Baker family’s tradition of community service and its deep ties to the Leon firefighting community. Baker’s father, Jim, was fire chief in Leon for many years.  John Baker was treasurer of the fire company for 10 years; his brother, Joe, of Leon, is an EMT and was head of the town’s volunteer ambulance company at one time. Another brother, David, who lives in Jamestown, is a medic on the Starflight helicopter ambulance team. Sarah Baker was an EMT in Leon before Sean was born and now devotes her time to caring for her two boys, Sean and his 6-year-old brother, James.
So far, Baker has put 1800 miles on the truck, connected with hundreds of families about congenital heart defects, and raised $5000 for pediatric cardiac surgery research. Sean was born with hypoplastic left heart syndrome, a condition in which the left ventricle is not fully formed and can’t pump blood through the heart properly. 
Baker wants parents to know how common congenital heart defects are: 1 in 110 babies are born with one. “A heart defect always has an underlying issue coupled with it,” Baker said. “Sean’s happened to be a compromised gastrointestinal system; he generally does not tolerate food by mouth, so he has a ‘J tube’ inserted in his stomach in order to eat.” Children normally outgrow these types of GI issues but Sean continues to deal with them and has had 18 surgeries related to his GI issues. 
Being part of the Sean Baker Strong appearances is a highlight of Sean’s young life, his father said: “He loves it. He loves being in the truck and being around people. He’s a little ham. He will pull the horn but he generally just wants to be in the truck cab, looking around.” Sean’s brother, James, is an essential part of the crew, his father says: “That truck doesn’t move without James in it.” 
The Sean Baker Strong team is driven by a passion for their cause, and by its circa 1975 American LaFrance truck, on loan from a fire truck dealer out of Alabama who made a deal with Baker: As long as he needs it for his mission, the truck is his to use. 
Baker has fitted the truck with banners and decals that deliver important messages about congenital heart defects to educate parents while children enjoy an up-close look at the fire truck. Kids can climb in the truck and get their pictures taken behind the wheel. In the course of their travels, the Baker family has met many families also affected by congenital heart defects whose children have been cared for at Golisano Children’s Hospital. 
The family and its fire truck have appeared at a number of community events, including: 
Erie County Fair
Marilla Carnival
Jamestown's Christmas Parade
Randolph Memorial Day Parade
World Series of Cars in Jamestown
Harley Davidson of Jamestown customer appreciation day
Otto Fire Department 75th anniversary
East Otto Blueberry Festival
E-ONE Fire Truck Pull
Numerous other car shows and local events 
Baker’s efforts help fund research on pediatric cardiac surgery conducted by George Alfieris, M.D., Director of Pediatric Cardiac Surgery at the Golisano Children's Hospital. Alfieris operated on two-day-old Sean in 2011 and performed two more cardiac surgeries on the boy the following year. “Dr. Alfieris was the one who saved Sean’s life; he’s given Sean a life he wouldn’t have had otherwise,” Baker said. “He’s the person I wanted to raise money for. He’s a very personable doctor who does incredible work. He and his Physician Assistant, Gina Cable, are incredible people; they don’t stop trying to help.” 
The Bakers and their fire truck aren’t stopping, either. Sean Baker Strong wrapped up 2015 with an appearance in the Gowanda Christmas Parade, and the family is busy booking more appearances for this year. 


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