Four-year-old Hunter Barr of Falmouth died last month from a rare brain tumor. He is pictured here on a golf course, one of his favorite places. Courtesy Marie Hart

FALMOUTH — Family and friends of Hunter Barr describe him as a child filled with energy and joy, intelligence and humor, a strong will and a love of music, adventure, hockey and golf.

It is no surprise that his death – shortly before midnight April 26 in the arms of his parents, Natalie and Ryan Barr – has left a deep void in the community around him. It is no surprise that his life touched many people during its all-too-short 4 years.

Hunter was diagnosed last December with a rare and aggressive brain tumor known as Diffuse Intrinsic Pontine Glioma. He underwent care at Boston Children’s Hospital and Maine Medical Center, and the fight he carried on – relearning at one point how to talk, walk and eat – inspired the term “Hunter Strong!” among his close-knit extended family, which includes his 3-year-old brother Griffin.

Hunter Barr, at left, is pictured with his parents, Natalie and Ryan, and brother Griffin. Courtesy Marie Hart

Nick Fasulo – the family’s spokesman, a cousin to Natalie Barr and considered an uncle by Hunter – called the boy’s parents “exceptionally comforting and supportive both physically and emotionally for Hunter through the entire process.” He also praised the “overarching love and support from the entire extended family.”

“He’s a warrior, our lion,” wrote Raelene Fasulo, Nick’s mother, on a Caring Bridge page, where she had provided updates on the child’s condition. “Godspeed sweetest Hunter, I hope you’re now sauntering on a golf course, banging on drums, riding a roller coaster, or flying over the Golden Gate Bridge.”

She said a few days later that “(w)e are all still reeling from this; well aware we are not alone,” noting that amid the coronavirus health crisis “there is so much heartbreak for so many others right now; the pandemic just adds to the pain of losing sweet Hunter.”

Marie and Rick Hart, Hunter’s maternal grandparents, said “Hunter changed our lives. The love we feel for him is immeasurable. The pain of losing him is unbearable. But the joy we have in our hearts of loving him so completely and the millions of happy memories we have of him will help us carry on. Until we are together again, we will miss him so.”

Diffuse Intrinsic Pontine Glioma, shortened to DIPG, is a pediatric tumor impacting the brain stem, according to St. Jude Children’s Research Hospital. The cancer represents only about 10%- 20% of all childhood brain tumors, and there is no cure. Symptoms include difficulty walking and balancing, chewing and swallowing problems, and nausea and vomiting, as well as morning headaches and facial weakness.

Radiation is the most common treatment course, aimed to shrink the tumor. The family, which raised nearly $167,000 toward Hunter’s treatment, has asked that donations be made in their son’s memory toward DIPG research at defeatdipg.org/meet-the-kids/hunter-barr/.

Following radiation treatment in February, Hunter and his family traveled to Disney World through the Make-a-Wish Foundation, which Marie Hart said was able to schedule the trip on short notice. He was thrilled to ride roller coasters, meet Disney characters, play golf with his father, uncle Cam Hart and grandfather “GP” (Rick Hart), and soak in a hot tub.

Before Hunter Barr and his family traveled to Disney World in February, they were sent off in style by a community gathering at the West Falmouth fire station. Hunter is at right, being held by his dad. Courtesy Nick Fasulo

Before they had left Maine, about 50 people gathered at the West Falmouth fire station to give Hunter a sendoff party, with the words “TEAM HUNTER” strung across a fire truck.

“It was just one of the coolest things I’ve ever seen, to have that support,” Nick Fasulo said. “They had signs, they were cheering … all our friends and people in the community that care about us (were there) to help send Hunter off, and make this the best moment for him.”

Griffin was constantly loving during the difficult time, and his parents answered the many questions he had about what his big brother was going through, Fusulo said.

“(Griffin) just loved to go up to Hunter every morning, every night, and give him a little kiss on the forehead while Hunter was laying down on the couch, which is where he spent most of the last few weeks of treatment,” Fasulo said. “There was never any fear.”‘

Hunter spent his final few weeks at home, with a nurse stopping by to keep him comfortable.

His family plans to formally honor his life later this year. Until then, they find solace from precious memories.

“(Hunter) had a really keen sense of the big world out there, and I really think that he was going to be someone that loved to travel and loved to explore,” Fasulo said. Hunter’s inquisitive nature “excited me, because it made me think that he was going to be someone that was a very outgoing person as he grew up. And that’s what I’ll miss most.”

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