Nine-year-old Charlie DeGrange died early Sunday morning of a rare and inoperable brain tumor.
The former Fresno boy had been in hospice care since late September. Charlie and his family never stopped praying for a miracle.
Charlie was diagnosed in July 2014, just days before his eighth birthday, with diffuse intrinsic pontine glioma. These rare and aggressive brain tumors are found in the brain stem and can’t be removed surgically or with chemotherapy. Around 300 children are diagnosed with DIPG every year. The tumors don’t normally appear in adults.
During his last months, Charlie took steroids and other drugs to help relieve pain. His tumor spread into his cerebellum, adding pressure on the brain stem and causing hearing problems. He started using a wheelchair but remained in high spirits.
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Our beautiful, perfect boy is gone.
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The DeGranges, who now live in Vacaville, decided against prolonged chemotherapy and instead focused on providing healthy food and natural supplements. They say it helped buy Charlie more time.
The community rallied to help realize many of Charlie’s dreams. The Make-A-Wish Foundation sent the family to New York City in January so Charlie could see skyscrapers. Last Christmas, St. Anthony of Padua Catholic Church rented the family a condo at Lake Tahoe and paid for snowboarding lessons for Charlie and his three siblings. Charlie also went to Disneyland, Legoland and met Oakland Raiders quarterback and former Fresno State star Derek Carr.
Facebook posts detail Charlie’s decline. In photos, his face became increasingly swollen due to steroids.
On Nov. 24: “Charlie’s days are getting harder. He’s sleeping more and eating less.”
On Friday: “Charlie is still hanging on. He was able to lay on the couch and watch us decorate the Christmas tree last night. He hasn’t eaten since Wednesday.”
On Sunday, the family wrote a final update.
“Our beautiful, perfect boy is gone. He passed away peacefully in his sleep. Hopefully everyone out there has been as inspired and encouraged as we were by his strength, courage and faith.”
Carlo “Charlie” Michael Gregory DeGrange
Date of birth: July 14, 2006
Date of death: Dec. 6, 2015
Survivors: Parents Gregri and Jessica DeGrange; brothers Garrett, 8, Myles, 6, and sister Giuliana, 4; grandparents Greg and Leslie DeGrange, Michael Sheley and Debbie Web-Dare