‘Brentley Strong’

LEOMINSTER — The greater community has been rallying around a local family facing the unimaginable.

Kasaundra Drinkwater and Tyler Corso’s young son Brentley Corso was diagnosed when he was only three weeks old with a rare genetic blood disorder called severe congenital neutropenia, also known as Kostmann syndrome.

“His treatment involved frequent hospital admissions and daily injections to boost his white blood cells that his body couldn’t produce independently,” his mom shared, adding that he has “been followed closely” by his care teams at Boston Children’s Hospital and Dana-Farber Cancer Institute’s Jimmy Fund Clinic in Boston.

In February, just weeks after Brentley’s third birthday on Jan. 27, Kasaundra and Tyler received a message that they needed to jump on an emergency call with their son’s hematology team to discuss his recent labs.

“They found a mutation and he needed to urgently undergo a bone marrow biopsy,” Kasaundra shared. “The bone marrow biopsy showed Brentley was pre-leukemic and had a deletion of chromosome 7, an accelerator towards leukemia and his injections that he was receiving daily accelerated the process as well.”

They were admitted to the hospital on April 27 for the conditioning he needed ahead of his bone marrow transplant, which included 16 rounds of chemotherapy and multiple rounds of immunosuppressants that caused Brentley to have rigors, episodes of involuntary shaking and shivering. He received a bone marrow transplant on May 8 and since then they have dealt with a number of complications such as graft versus host disease of the skin and esophagus and pneumonia.

“Drops in his levels of magnesium and hemoglobin resulted in multiple blood transfusions and magnesium infusions and mucositis caused him to sleep for days on end, no eating or drinking, no energy, no talking or laughs,” Kasaundra disclosed. “We broke during those moments. We missed our boy being himself and what was only about two weeks of no energy felt like a lifetime.”

They were discharged from the hospital on June 2, five weeks and one day total of inpatient time. By that point Brentley had already undergone around 15 procedures since he was born due to multiple medical conditions he has experienced throughout his young life.

Kasaundra grew up in Lunenburg and eventually moved to Leominster with her family, where Tyler grew up. They both attended Leominster High School, and their blended family includes Brentley, 7-year-old Amalia Drinkwater and 8-year-old Darzell Drinkwater.

The couple has been together for almost six years, and they are both 26 years old. Kasaundra said that when her youngest child Brentley was first diagnosed with neutropenia, she “felt so lost.”

“It is such a rare condition with not many solutions to it and having to watch him be poked everyday by injections and frequent blood test was truly heartbreaking,” she disclosed.

They frequently went back and forth between Boston Children’s Hospital and their home as his doctors and care team did all kinds of tests on Brentley.

“I remember our first admission they needed to do an in-room procedure and asked his dad Tyler and I to step out,” Kasaundra recalled. “We stood outside the door looking through the little window of the door crying because we didn’t know what was to come for our son.”

Receiving the call that Brentley needed a bone marrow transplant was understandably heartbreaking for his parents after everything they had all already been through.

“It completely broke his father and I,” Kasaundra said. “We cried and held each other multiple times and having to break the news to his brother and sister was just absolutely devastating. They’re young and they didn’t fully understand what was about to come of our lives, but we did our best making sure they were prepared mentally, emotionally, and physically of what was to come very soon.”

She remembers “crying for days randomly,” while she was driving or making dinner or cuddling with her kids, “feeling so hopeless that these moments with all three of my kids could’ve been stripped away from me.”

What made it even harder for them is knowing that a bone marrow transplant for Brentley “is not a guarantee to a happy, long living life.”

“There are many complications that can go wrong and many children have lost their lives through the process so knowing we were going to endure such a traumatic and painful experience was just heart wrenching,” Kasaundra revealed.

She said Brentley’s journey through the entire bone marrow transplant process “changed our lives dramatically.” Their two oldest children stayed with her father Kendall Drinkwater and stepmother Jessica Moncada for two months during all of it “so they could continue their lives.”

“They went two months with barely seeing me, their mother, and not seeing their brother at all,” Kasaundra said.

She is grateful that her mother Christie Palermo brought Amalia and Darzell into Boston for Mother’s Day, where they spent some time and had lunch together, “united for only a few hours.”

“I remember going back to our room at Boston Children’s crying and upset, just sleeping the rest of the day away because of how depressed I was because of how our family felt so broken apart in those moments,” Kasaundra said.

She took a leave from her job and became a full time stay at home mom and Tyler was on unpaid leave for seven weeks while Brentley was an inpatient for his bone marrow transplant “so he could be bedside with our son as well.”

“We now are on one income, which has been difficult to navigate because dad has to work more overtime to make up for lost wages from me working,” Kasaundra shared. “We can no longer go to restaurants or businesses like we once had with Brentley as he cannot be in large crowds during this time.

“He has to stay home instead of attending his longtime daycare with all his friends that he’s grown to love and be around and he will need to be isolated with me every day until at minimum February of 2027,” she said. “Darzell and Amalia continue to attend schools, but when they get home, they need to wash their hands and change their clothes so we can try to reduce any germs coming around their brother. We don’t get to have family and friends over as frequently as we once did. We loved hosting our family and friends inside our home, but we need to minimize the risk of infection coming around Brentley.”

Tyler’s best friend Jessie Morris’s mother Louise Morris organized multiple charms-making parties as a fundraiser for Brentley and his family. Over two dozen people showed up to the one on Aug. 30 at the Leominster Veterans Center, with family, friends and even strangers who wanted to help. Proceeds from the upwards of 200 charms total made by them and others at a previous charms party sold at the recent Johnny Appleseed Festival in Leominster have gone directly to the family.

Louise Morris reported that the company she works for, DF Murphy Insurance Agency, donated $100 to the family and then another $500 check appeared on her desk at the Hudson office after the owner asked about Brentley. Her cousin Paul, who is battling prostate cancer himself, donated $200 and several ladies at the August charms-making event all bought one for themselves to take home.

Kasaundra said Louise’s efforts to help them — along with the many people from the community who participated by making charms and purchasing them — “has meant to much to our family.”

“Seeing them come together for us has meant more than we can put into words,” said Kasaundra, who was at the August charms-making party along with her two older kids, where a young boy made a red and blue Spiderman-themed charm that she took home to put on Brentley’s Spiderman backpack.

“What has kept Brentley going is truly Spiderman,” Kasaundra said of the superhero her son idolizes. “He has become such a big part of Brentley’s journey to the point that he wears his spidey suit everywhere he goes and he tells all his doctors he’s not Brentley, he’s Peter Parker the real Spiderman. It’s how he’s expressed his strength and resilience throughout this whole process.”

She relayed that Jesse Morris “has always been an amazing friend to us, helping us out whenever we need, is also so thankful for Louise Morris “for putting together something so meaningful to us to help support us during such a difficult time.”

“Watching a community come together, people we have never met prior, and take time out of their day to craft in honor of our son has showed me how powerful a community can be and how thoughtful,” Kasaundra said. “It truly was amazing to watch unfold.”

Funds raised through the sales of the charms and a GoFundMe page that was up for a while has enabled Kasaundra to be home with her youngest son “and continue providing him the care he needs full time while we can hopefully let go of some of the financial stress that has come with the process.”

They closed the GoFundMe “as traffic had slowed down and we were awaiting a more definitive timeline on things,” Kasaundra shared, saying they should obtain the proceeds from it in May.

She said they may possibly launch another GoFundMe page “since we didn’t know this process could be a whole year.” But for now if people are moved to donate to help the family, they have a Venmo account open — @Brentleystrong1.

A Brentley Strong fundraiser put together by Kasaundra’s mom Christie will being held on Saturday, Oct. 10, at 3 p.m. at Hot Shotz Bar & Grill, 1293 N Main St. Leominster. The special event will feature entertainment, food, drinks and a plethora of raffle prizes donated by local businesses, restaurants, groups and people.

Kasaundra said they are incredibly grateful for all of the financial and other backing they have received from so many people “during this difficult time in our family’s lives.”

“It’s not a simple as a follow up here and there. It’s constant appointments, lab draws, infusions, admissions and medication given daily multiple times a day along with isolation and having to adapt our lifestyles to something that was so foreign to us prior,” she shared. “The support we have received overall has been absolutely breathtaking.”