Twenty-month-old Castiel Kelly of Nashua with his parents, Michael and Leidiane. Castiel has been fighting Stage 4 high-risk neuroblastoma for the past year. Courtesy photo/Michael and Leidiane Kelly

NASHUA – For the past year, Michael Kelly and wife Leidiane relied on Instagram to share the story of their 20-month-old son, Castiel, who continues to fight Stage 4 high-risk neuroblastoma — then, without any warning, their account was terminated earlier this month.

“It’s devastating,” said Kelly, adding that his family had amassed a following of 10,000 supporters. “We don’t know why, we don’t know if we were reported.”

All they received was a generic message stating that they had violated Instagram’s community standards. No further explanation was given.

“We have never violated any guidelines,” said Leidiane. “We never received a single previous warning. The disabling appears to be either an algorithmic error or, more likely, a coordinated mass-reporting attack, something well-documented against medical fundraising accounts.”

There is also no way to appeal the decision as it is not possible to speak with a live person.

“They basically have this hands-off approach,” Kelly said.

He also said pictures of Castiel and other pediatric cancer patients have been posted on Instagram accounts created by scammers who are using sick children to make money.

Speaking about Castiel’s illness, Kelly said his son’s symptoms began to surface in April 2025. At the time, he had a small bump on the side of his head and was having trouble breathing.

“We were going to the pediatrician every week,” said Kelly.

However, Castiel’s doctor was dismissive and maintained that there was no cause for alarm. Yet, Kelly and his wife knew something was wrong and insisted on an ultrasound.

The results of the ultrasound were grim; they revealed that the small bump on Castiel’s head was growing.

“Within two hours, we got a call to go to Boston Children’s Hospital immediately,” said Kelly.

The next day, his little boy was diagnosed with Stage 4 high-risk neuroblastoma. There was also more than one tumor.

“He had dozens of tumors,” said Kelly.

During the past several months, Castiel has endured aggressive chemotherapy, 60 rounds of radiation, 24 surgeries, two stem cell transplants and is currently undergoing immunotherapy.

To further complicate matters, Castiel also suffered two blood infections.

“It’s been a long road,” said Kelly. “Anytime he has a fever, we have to go to the ER.”

Although most of the tumors are gone at this point, Kelly said there is a 60 percent chance that Castiel could relapse within five years. Should that happen, he would only have a 10 percent chance of surviving.

The family’s GoFundMe page remains active and is available at https://gofund.me/b8b5ead67.

“While our health insurance covers part of his medical care,” said Leidiane. “We still face significant out-of-pocket costs, gas to and from Boston, food during long days at the hospital and the income I lost when I had to stop working to care for Castiel full-time. These are the real, everyday costs of fighting pediatric cancer.”

Castiel’s uncle, James Kelly, described his nephew as “joy personified.”

“He’s bright-eyed, full of giggles, cuddly beyond measure, the kind of baby who reaches out for you and instantly steals your heart,” said James. “No family is prepared for this. But we believe in the strength of community to carry a family through what no one should face alone.”

He also highlighted Castiel’s incredible will to live.

“Castiel is a warrior in footie pajamas,” said James. “He’s fighting. So we will, too beside him, for him and with unshakable hope.”