By Michael Coughlin Jr.
Sunday marks the date another Pan-Mass Challenge (PMC) Kids Ride will take place at Paul Revere Park to raise money for the Dana-Farber Cancer Institute, and it will feature a courageous fighter by the name of Matilda Danoff.
Matilda, affectionately known as Tilly, is a five-year-old from Somerville who was diagnosed with a low-grade glioma tumor in her spine in February 2021.
Tilly’s father, Josh Danoff, explained that her tumor originally went from the C1 vertebrae down to the T8 vertebrae.
He said that when Tilly was first diagnosed and undergoing chemotherapy treatment, she had right-sided weakness in her hand and arm that went down her leg due to the location of the tumor. Her leg was also paralyzed during her initial surgery, though it has since come back.
“So she wasn’t able to use her right hand for anything, but she could use her left hand, and then one morning, I saw her go to flush the toilet, and she couldn’t flush the toilet,” said Danoff.
“You know, at that point, you just kind of have this sinking feeling, and a few weeks later, whenever it was, we got the MRI, and the MRI showed that the tumor had grown. So for me, in the back of my mind, tumor growth equals her not being able to do stuff, so it can affect her quality of life.”
This diagnosis obviously took its toll on an — at the time — two-year-old child in Tilly but also on the rest of her family.
Danoff compared getting the news of Tilly’s diagnosis to when he and his wife Clare Storck’s eldest daughter, Josephine, who is now 10 years old, was born and will ride along with Tilly this weekend.
“I got this feeling. It can’t be similar to when Josephine was born, but it was like some like inverted version of that because I also knew, I knew that life was never going to be the same again after this diagnosis,” said Danoff.
“Our family is forever different, and the dynamics are different.”
As time went on, and Tilly kept on persevering, the Danoff household received some encouraging news in March — her tumor had shrunk.
“When they said that the tumor had shrunk — in the greatest possible way — we were not prepared for it because we didn’t really ever see that as an option,” said Danoff.
He explained that they had always been rooting, in a sense, for nothing — meaning that the tumor was stable.
“Nothing is everything like it’s everything. If the tumor was stable, then that’s it. Then it’s this exhale, and it’s this combination of just like relief and happiness,” said Danoff.
In the months before they received the news that Tilly’s tumor had shrunk, she got more motion in her hand and arm.
“It just felt like we were granted this hopefulness for Tilly that we had not really experienced before,” said Danoff.
For Danoff, PMC has been a big part of his life even before he had children, as his mother has ridden in the PMC with family friends for more than 10 years. Union Square Donuts, of which Danoff is a Co-Founder, has also donated donuts to the Jimmy Fund and Dana-Farber for years.
Danoff spoke about bringing Tilly to the Jimmy Fund for the first time — she received treatment at Dana-Farber’s Jimmy Fund Clinic — and walking over the PMC bridge to progress, a walk he had done before under different circumstances. “It brought it back pretty close and pretty hard and pretty heavy,” he said before adding that it provided an even deeper meaning for fundraising.
For example, Storck participates in the winter cycle. Josephine rode in a kids ride two years ago, and both she and Tilly rode in a kids ride last year.
Moreover, Danoff’s aunt and uncle helped create a fund at Dana-Farber called “The Matilda Rose Danoff Fund for Spinal Cord Tumor Research.”
According to Danoff, through rides like this Sunday’s Kids Ride, teams riding for Tilly raise money, which goes toward Dana-Farber Cancer Institute’s general fund. Some of the money is then allocated toward Tilly’s fund, which helps physicians study and better treat spinal cord tumors.
He explained that treatments for these types of tumors have evolved in the last 10 years, and remarkably, in another 10 years, Tilly could potentially reap the benefits from her own fund.
“This fund not only could have a wonderful impact on other kids that have a similar diagnosis to Tilly, but there’s a chance that through the research that’s done, Tilly could potentially become a beneficiary of her own fund,” said Danoff.
While Tilly, who will have been off of treatment for two years this July, will gear up for the ride on Sunday — her battle continues. “Tilly will never really get to experience the term remission,” said Danoff.
Danoff explained that Tilly’s tumor is unable to be removed and that data indicates that for a majority of patients in her situation, the tumor usually ceases activity in their mid-20s.
“The kids live out the rest of their lives in kind of whatever shape they are in when they get to that point,” said Danoff.
Currently, Tilly does horseback riding therapy and physical therapy, visits a nutritionist and chiropractor, and more. She will also likely receive an MRI every 12 weeks for the next 20 years.
“We are doing all of these things to try to have Tilly be in the best shape possible, but what the data says is that it’s not necessarily a matter of if the tumor grows again; it’s a matter of when,” said Danoff.
That said, Danoff made it clear that he is fortunate to see his young daughter’s strength and perseverance, whether that be riding a bike or scooter this weekend or being able to get dressed on her own — things most people take for granted.
“I feel fortunate that I’m here to witness what this little girl is capable of,” said Danoff.
2024 marks the 20th year of the PMC Kids Ride program — a branch of PMC’s annual fundraising efforts. Not only that, but this Sunday’s Kids Ride in Charlestown will help contribute to an upcoming milestone for PMC: crossing $1 billion in lifetime fundraising for the Dana-Farber Cancer Institute.
For more information about the PMC’s Kids Ride program, visit https://kids.pmc.org/.
For more information about this Sunday’s Charlestown PMC Kids Ride, which begins at 10:00 a.m. at Paul Revere Park, visit https://kids.pmc.org/charlestown.