An 8-year-old former Fresno boy who has an incurable brain tumor that can’t be surgically removed recently received good news from doctors.
Charlie DeGrange was diagnosed in July with Diffuse Intrinsic Pontine Glioma, a tumor that grows in the middle of the brain stem where surgeons can’t remove it. Doctors gave him about a year to live.
After the diagnosis, Greg and Jessica DeGrange opted for experimental treatment for their son to prolong his life. Despite facing financial hardships, the DeGranges moved the family from Fresno to Napa to be closer for Charlie’s treatments at UCSF Benoiff Children’s Hospital in San Francisco.
The DeGrange family’s situation was presented in The Bee on Aug. 16, and family and friends have rallied in a spirit of love with fundraisers and other ways for people to support Charlie.
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After months of experimental treatment, an MRI on Jan. 8 showed the tumor has shrunk about 20% in diameter from the original scan.
Greg DeGrange says he and his wife are “excited” by the news and see it as something positive that prolongs Charlie’s life.
“Obviously, we don’t know how long or when or if the tumor will start to grow,” he says. “You kind of have mixed feelings. It didn’t kill it.”
Greg DeGrange says Charlie’s situation is still very serious, but he and his wife have hope.
“Prolong his life — my faith tells me yes,” he says. “A lot of our hope comes from faith and prayer.”
Jessica DeGrange was so happy with the MRI results that she posted a photo of a happy Charlie immediately on Facebook. The Support Charlie DeGrange Facebook page has 2,192 followers.
It was a busy January for Charlie and the DeGranges. He is the oldest of four children.
Make a Wish Greater Bay Area granted Charlie’s wish to experience the sights of New York City, from Jan. 10-15. The entire family visited the Statue of Liberty, Ellis Island, Central Park Zoo, Empire State Building and attended the Tony Award-winning “Matilda The Musical” show on Broadway.
“The Broadway show was awesome,” Greg DeGrange says. “It kept all the kids’ attention. Charlie was excited.”
On Jan. 17, Charlie was the “sixth man” at the Fresno State men’s basketball game against Wyoming at Save Mart Center. He ran onto the court during team introductions as fans cheered for him, and he sat on the bench.
Charlie also went onto the field during warm-ups at the Oakland Raiders-Buffalo Bills game Dec. 21, meeting Raiders quarterback and former Fresno State star Derek Carr. Charlie presented Carr with a homemade poster, showing the many ways he could write Carr’s jersey number 4.
Carr posted a photo of the poster on Facebook and mailed it back to Charlie with Carr’s autograph. Carr and Charlie have stayed in touch.
“Derek has been really good with Charlie,” Greg DeGrange says.
The DeGranges say they are grateful for people’s generosity and kindness during their difficult time. People can still donate at youcaring.com/other/charlie-de-grange-savings-fund/203540. A fundraiser for Charlie also is scheduled May 16 at the Napa Valley Brewing Company. May is National Brain Cancer Awareness Month.
The DeGranges have since moved to Vacaville, which is closer than Napa to UCSF Benoiff Children’s Hospital. Charlie now is scheduled monthly to see doctors. His next visit is March 5.
“It’s awesome to hear the tumor shrunk,” Greg DeGrange says. “Charlie’s balance seems to be good as well as his speaking. He’s also doing (home) school. All that is positive.”