When Jackson Bisazza of Holliston was two years old, his father Brian was stunned when he routinely picked up his son and noticed that Jackson’s hip join popped out then back into its socket.
The family immediately called Boston Children’s Hospital, where Jackson had surgery to resolve his hip dysplasia. But that was only the beginning. In the intervening years, Jackson’s parents, Wendy and Brian, have, without choice, become accustomed to their son’s near-constant medical issues and accompanying hospitalizations. Now 11 years old, Jackson has been through a total of 39 surgeries, some minor and some major.
Fortunately, Wendy says, through it all, their family has not been alone. Through the MDSC CARES Program, which helps families whose child with Down syndrome is experiencing an extended hospital stay and/or ongoing complex medical care, MDSC has provided the Bisazzas with critical support at the most critical times.
As Wendy puts it, not only does MDSC “never miss a surgery,” but the care packages or gift cards are always thoughtful, never superficial — the gift card for Domino’s Pizza, which happens to be Jackson’s favorite; or the one for Au Bon Pain, which just happens to have a location right in the hospital lobby. “It’s always very personal,” Wendy says. “That extra touch.”
In fact, it was that extra personal outreach that impressed the Bisazzas about MDSC during those tender first weeks of Jackson’s life, well before they needed the specialty support of MDSC CARES.
As the couple recall, there in the delivery ward, hours after they were told that their second child had Down syndrome, they were given a plethora of information and resources for their new baby. Overwhelmed but determined, they filled out form after form to potentially connect with organizations who might help in their new, unexpected journey ahead.
Weeks later, when Brian was back to work, a care package arrived from MDSC’s Parents First Call Program. Wendy remembers every item — the blanket, the book, the onesie. But it was the calendar, featuring people with Down syndrome simply living their full lives, that hit Wendy, and then Brian when he got home that night.
“The calendar put so much into perspective for us. We knew it was going to be okay,” Wendy says. They also knew something else. “After that package was delivered, we said, ‘Okay [MDSC] is who we’re going to focus on.’”
During the first two years of Jackson’s life, the Bisazzas enjoyed their MDSC affiliation — learning from experts at the Annual Conference, captaining a big Buddy Walk team, and connecting with other families at events. “MDSC was like a big hug for us,” Wendy says.
But over the last nine years, as Jackson has endured repeated reconstructive and reparative surgeries on his pelvis, legs and knees as well as two transplants, MDSC has been there for the Bisazzas in an entirely different way.
“He’s been immobile most of his life,” Wendy says, noting that typically after surgery he’ll spend 6 to 8 weeks in a wheelchair. “We’ll just get through PT, get him up and walking, and then it starts all over again.”
Somehow, none of it gets Jackson down — his warmth, smile and sense of humor are a constant through it all. (“The things that come out of his mouth blow me away,” Wendy says.) In Holliston, Jackson is a bit of a celebrity. Family friends, including town firefighters having a bad day, drop by the Bisazza house for a “Jackson hug.” He’s close with school friends too, though his best friend remains his 20-year-old brother AJ.
Still, the ongoing medical challenges take their toll. “You would think it would get easier, but it doesn’t,” Wendy says. Up until last year, the Bisazzas had their surgery routine at Boston Children’s Hospital down to a T. Then Covid hit, and they had to make some dispiriting changes — no more parents with Jackson during surgery. Since then, he’s been under anesthesia four times and has once again adjusted and accepted.
For now, the Bisazzas believe and hope the surgeries are on pause and life can go back to normal for a bit. Ideally, they would like to work on Jackson’s stamina — walking the neighborhood, riding his bike, maybe someday going to the zoo without using his wheelchair.
Wendy says she would love to continue paying it forward with MDSC by re-starting a Buddy Walk team in Jackson’s name and serving as a Parents First Call volunteer to help other families. But whether she can or not, the Bisazzas know that MDSC will be there for them whatever comes next.
“It has been such a relief to know that MDSC is in our corner,” Wendy says, “and that they will be for the foreseeable future.”
