When the Raleigh Fire Department recently received a request from a sick boy’s mom, members didn’t hesitate. They, along with some of their local colleagues, organized a parade of fire apparatus to help celebrate Jacob Bohley's fourth birthday party.
To say that Jacob has had a difficult year would be an understatement. In March 2020, Jacob was diagnosed with a rare genetic disease called MPS1 Hurler Syndrome. The disease affects one in 100,000 people and is terminal. There is no cure, said his mother, Alicia Bohley.
Jacob’s body is missing an enzyme that breaks down waste and as a result it builds up on his bones, skin, tissue and organs.
“We’ve spent the past year, during a pandemic, in and out of hospitals,” Alicia said. “Jacob’s longest inpatient stay was 58 days and he has had more than 10 procedures and surgeries. But you would never know it based on his spirit and the infectious joy he exhibits.”
‘This Little Boy Deserves the World’
Jacob’s family had seen parades organized by RFD and contacted the department asking if it was possible to have something similar arranged for Jacob.
“This little boy deserves the world and we wanted to be able to give him the best 4th birthday possible,” Alicia said.
RFD was onboard immediately. They arranged for several fire apparatus to gather in Jacob’s neighborhood to “really put on a show,” said Capt. Daniel Gardner. After the parade, firefighters, who also included members from other local fire departments, showed their vehicles and equipment, and just hung out with Jacob, eating cookies and telling stories.
“That all meant so much to everyone in attendance and of course, Jacob himself was ecstatic,” Alicia said. “These firefighters made it incredibly special for him and we are so grateful!”
If you’re interested in following Jacob’s journey, you can do so at www.facebook.com/jacobsjourneymps1.