Saving Sophia: N.S. community rallies to support girl with inoperable brain tumour

Sophia MacInnis and her family are still opening Christmas cards in March -- that’s because this holiday, they received over 600 in a single day. 

“I personally stopped counting at over 1,800 cards,” said Sophia’s mother, Amy MacInnis. “We read every card to her.”

“Sophia is an animal lover,” said Sophia’s father, Ian MacInnis. “A lot of people sent us pictures of their pets too which she enjoyed.” 

The greetings were all in an effort to lift Sophia’s spirit after a devastating discovery. 

In August 2022, the 10-year-old girl from Lower Sackville, N.S., was diagnosed with diffuse intrinsic pontine glioma, a rare and aggressive form of brain cancer.

The condition currently has a zero-per cent chance of survival. 

“When they told me what it was I couldn’t even listen,” said Amy. “I didn’t want to know what it was.” 

Sophia immediately underwent 30 rounds of back-to-back radiation. They had to wait six weeks to undergo another MRI. In November 2022, they were told the treatment was unsuccessful. 

“There’s no clinical trials in Canada, so there’s no other treatment other than radiation,” explained Amy. 

Desperate for options, her parents looked to other countries for support.

They discovered a clinical drug trial in Rochester, New York. Sophia was approved immediately, said Amy.

“The drug company had the final say on whether or not she would get the drug,” said Amy. “An hour and a half after meeting with the doctor, she was approved. The doctor said they’d never had anyone approved that quickly.”

The treatment plan requires Sophia and her family to return to the U.S. every eight weeks for appointments and a re-supply of medication. On top of the travel costs are Sophia’s accessibility needs for accommodations and transportation. 

“For her to be without extra legroom on the airplane is pretty excruciating as well because her legs stiffen up,” said Amy. “We did have to go fairly last minute this time and the trip cost about $8,000.”

When Coady MacNeil of Southland Transportation heard about Sophia’s story, he jumped in to organize several fundraisers for the family.

“Our entire team has rallied around the MacInnis family to help,” said MacNeil.

The company is hosting a Stuff the Bus Bottle Drive for Sophia on Saturday. There will be five drop-off points across the HRM where people can drop off bottles and donations.  

“We’re hoping after St. Patrick’s Day that people will have lots of empty bottles to return,” said MacNeil. “Every donation counts.” 

In addition to the bottle drive, the company has also arranged a bowling fundraiser on Saturday, March 25.

Sophia’s story is resonating around the world. She received a signed jersey from hockey superstar Brad Marchand as well as a video message from her favourite band, Imagine Dragons. 

“We see how much Sophia means to people and everyone wants to help her,” said Amy. “We’re so grateful to the community for their support.” 

Southland Transportation’s Stuff the Bus Bottle Drive for Sophia will be held from 10 a.m. to 2 p.m. on Saturday at the following locations:

• Royal LePage Anchor Realty -- 405 Sackville Drive
• Atlantic Superstore Sackville Drive -- 745 Sackville Drive
• Atlantic Superstore Bedford Highway -- 1650 Bedford Highway
• Atlantic Superstore Portland Street -- 650 Portland Street
• 764 Bedford Highway Bus Yard (Beside Esquire Restaurant) 

To follow Sophia’s journey and learn of other fundraising efforts, visit the Help Sophia Smile Facebook page or GoFundMe page.