Gardner

LEOMINSTER — Victory Rose was eight months old when she finally came home from the hospital after being born, a day and milestone her parents celebrated with great joy.

“She is growing, she is thriving and she is loving her life and so are we,” said her father Brian Downey of he and his wife Corrine’s now three-year-old who is 3 feet tall and weighs almost 40 pounds.

That the preschooler is not only alive but well is a true testament to her parents’ love, dedication and advocacy following Victory being prenatally diagnosed with Trisomy-13, a genetic chromosomal condition that those in the medical world call “incompatible with life.”

“Because of this condition, every hospital that we went to told us that we should abort her and that if she was delivered at their hospital, they would only offer comfort care and no intervention,” Brian said of the stressful time leading up to Victory’s birth on July 19, 2019. “It wasn’t until one doctor from Framingham came up with a plan to allow her to be delivered in Framingham, get her stable and then transfer to Boston Children’s Hospital if needed.”

The couple, residents of Leominster for the last seven years, decided to go with the hopeful plan and after their daughter was delivered at Framingham Union Hospital. Victory, who “did have some complications” at birth was immediately transported to the neonatal intensive care unit at Boston Children’s Hospital.

The little fighter remained there for the first six months of her life — and so did her parents.

“We slept, ate and breathed Boston Children’s Hospital for those six months,” Brian recalled. “Sometimes it was in the sleep space together, sometimes we would get a hotel room for a couple of nights, courtesy of the hospital, and sometimes one of us would be able to stay overnight and the other had to commute back and forth for a period of time but we were there every day and night with Victory.”

During those six months, Victory had 11 different surgeries. G-tube surgeries, open heart surgery, eye surgeries, tracheostomy surgery and more. She required a ventilator, 24/7 oxygen support and a pulse oximeter among other things.

“Because of all of this medical equipment she now needed, after she was discharged from Boston Children’s she needed to go to Franciscan’s Children’s rehab facility, where we as her parents needed to learn how all of this equipment worked so that we would be better prepared to take care of her at home. And we did,” her father shared.

Victory finally came home on March 18, 2020, just days after the initial COVID-19 pandemic shutdown. Brian is proud to report that these days she is doing very well.

“She has been medically cleared of so many of the issues that she was born with, she has been taken off of so many meds that she was put on during her first couple of months of life and her follow-up appointments with her Children’s Hospital doctors and specialists are becoming further and further apart,” he said. “This is all because of the fact that Boston Children’s Hospital was the only hospital in all of Massachusetts that granted our wishes and did everything that they could for Victory. They literally saved her life multiple times so that she could have the life that she deserves now, the life of Victory.”

Corrine said that while the prognosis was “dire, we had to give her a chance, we couldn’t give up. Incompatible with life but it doesn’t have to be.”

“This is not something that has to be the narrative, it can change if they change the way they take care of the kids and Victory is proof of that,” Brian added. “The reason why the survival rate is so low is because it goes by kids who do not receive life-saving intervention or do not survive Trisomy. If you go by those kids who receive life-saving intervention, the rate would be so much higher.”

Boston Children’s Hospital will always be a part of Victory’s life and Brian said they “still take care of her to this day.” And it was because of this special relationship they have with the hospital and the immense gratitude for Victory’s medical care team that Brian was asked to run the Boston Marathon on April 17 as a member of BCH’s Miles for Miracles team in honor of his daughter, an effort dubbed as “Running with Victory” that will benefit the hospital’s Every Child Fund.

“This is something that has been a lifelong dream of mine, especially since she was born,” Brian said of being part of the meaningful marathon team.

Brian is inching towards his $10,000 marathon fundraising goal with close to $8,000 in donations as of press time.

He was recently a guest on Mayor Dean Mazzarella’s Leominster Access Television show “Leominster Talks,” which drew more donations. Brian said he appreciated the opportunity to share his daughter’s “inspiring story” on the show, which “opened doors to other people in the community that have reached out to help,” and through their Facebook page Victory’s Victory!

The devoted father, who used to run regularly while growing up in New Jersey near the border of Staten Island, said that the training leading up to the holy grail of marathons, while “hectic,” has been manageable with help from coaches and their overnight nurses “who are a huge help.” And that he has a beautiful inspiration to focus on: his daughter.

“I would never be able to do any of it if it wasn’t for my wife, she is really the reason I can do it,” Brian said of his life partner Corrine.

Their tight-knit village includes a Facebook group: Trisomy 13 LIFE Support — Living with Patau Syndrome, people and parents going through the same thing that have helped them to “adapt to this type of lifestyle.”

“There’s many Trisomy 13 … angels and warriors whom I have had the privilege and permission from parents to honor by having their names on the back of my official Boston Athletic Association Boston Marathon and Boston Children’s race day singlet,” Brian said. “I will be carrying them on my back the whole way to the finish line and carrying them in my heart every mile.”

Brian and Corrine met in 2001 and “became best friends.” They went to the same college in Barrington, Rhode Island and will be celebrating their eighth wedding anniversary this month. Victory’s big brother, 11-year-old E’Lenai, looks out for his little sister and Brian said his parents have also been huge supporters.

“They are in New Jersey, but they are very helpful and supportive in every way you can imagine,” he said of his recently retired mom and retired police officer dad. “A lot of what I get is from the both of them, they have been behind us supporting us every step of the way.”

Brian went on to talk about other pieces of their support system, Leominster businesses such as Tiny Bubbles Laundromat, who collected $500 for the family through donations and tips staff were happy to share, and Uno’s Pizzeria & Grill, who did a “dough raiser” back in December “that was huge and made over $1,000.” One local family gave them a “huge financial Christmas gift,” another reached out about doing a docuseries on Victory and a friend started a GoFundMe.

CVS on Mill Street has also been “one of the major supports” for the Downeys since day one.

“They go above and beyond if we are unexpectedly out of meds, short on meds, can’t get meds from other pharmacies,” Brian said, naming the lead pharmacist and other pharmacists as people who have helped them immensely. “They make sure we are not struggling or in panic mode and they make sure we do not go without and they have also made huge donations.”

The staff that works at the Dunkin’ Donuts inside Mr. Mike’s on Main Street “have been a huge support,” offering them free coffee at times. Brian said when he stopped in there the morning Victory was coming home from the hospital, he shared the good news with the staff.

“The whole place broke out in cheers,” Brian recalled. “These people who have just been businesses to us have become family.”

Another important part of their support system is the caring congregation at Bread of Life Church in Westminster, which the couple started attending in the summer of 2018. The church did a fundraiser for them while they were living in the hospital, money that they said has “sustained us through this whole time” as neither of them are able to work due to taking care of their daughter full-time.

“They have supported us spiritually, financially, they have helped us move,” Corrine said, adding that because of all that, they have been able to stay home and care for Victory and Brian has been able to dedicate time to training and fundraising for the marathon. “They are amazing, they are the ones who deserve the whole credit. Without them, we wouldn’t have been able to do the marathon.”

Brian echoed her thoughts, saying that the church members “have literally been our lifeline from day one.”

“The pastors have visited us in the hospital, prayed for us, been with us,” he said. “The church and individuals there have played such a huge role in all of this, whether it be prayer or finances or encouragement or visiting us.”

Because of the pandemic and their focus on caring for Victory, they have been unable to get to church much over the last few years — making the continued, staunch support from the church even more amazing. They are so supportive, in fact, that they are planning another family-friendly fundraiser to benefit the Downey clan, a cornhole tournament that will begin at 10 a.m. on Saturday, May 6, at the church.

“Some of them have only heard of us,” Brian said of their church family.

When asked how it feels to have the community, both local and far-reaching, lift them up as a family, the father of two said “it is pretty huge.”

“In the grand scheme of things, all I’m doing is running compared to everything people around me are doing, have had to do, have offered to do, for me to be able to do this,” he said. “I’ve always wanted to run in the marathon, even before Victory was a thought in my mind. Now I have an even greater purpose — to raise awareness so that children diagnosed with Trisomy can thrive and have the life they deserve.”

Brian said they will never forget the “life-saving interventions” that Victory received at the Boston Children’s and the loving care she has continued to receive since then, the whole reason she is even here today – “always smiling and laughing.”

“Things in life, as bad as they seem, there is always going to be a victory.”