The gift of resilience
Feisty and joyfully determined, Brigid has confronted and overcome every obstacle in her path—a serious infection before birth, a liver transplant in infancy and hearing loss.
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At 5, Brigid decided she could “sit all by myself,” during her routine labwork. After the appointment, she confided, “I was nervous, but that was a blast.”
Brigid contracted a virus in utero and was born prematurely. A 79-day NICU stay followed, but the infection had damaged her liver beyond repair, and she was listed for a transplant on the national organ registry. Within days, her parents learned another family had made the selfless donation that could give their daughter a future.
Brigid started to thrive after the transplant, but she had a long way to go, says her mother Melissa. Her trademark resilience has served her well.
Born deaf in her right ear, Brigid had a cochlear implant inserted to partially restore hearing. She later lost hearing in her left ear and had a second implant. Since then, Brigid has found her voice. She's discovered singing and reading and happily broadcasts her ideas.
The pandemic has posed new challenges. Brigid relies on immunosuppressants to prevent transplant rejection, making her more susceptible to infection. Plus, masks can hinder communication for the hard of hearing. Melissa and her husband Laurence work closely with Boston Children's experts to make decisions about school and other activities.
Meanwhile, Brigid has taken it all in stride. Last fall, she marked another accomplishment—her fourth year as a Miles for Miracles Boston Marathon patient partner. “It's empowering for her to be part of a team supporting the hospital,” says Melissa.
As Melissa and Laurence anticipate their daughter's future, they hope Brigid continues to blossom as an advocate for herself, for the deaf and hard of hearing community and for Boston Children's patients.
liver transplants since 1984
organ transplants since 1971
patients currently awaiting an organ donation
When Dante, who has autism, started suffering from seizures, his doctors ordered inpatient testing to better understand his condition. But the teen kept leaving his room to ride the elevator, making it impossible to successfully complete his exam.
Enter Miller. She worked with Dante's care team and mom, Tina, to design a personalized behavior plan to motivate her patient. When Dante completed a task, such as keeping his electrode cap on or staying in his room, he could collect a ticket and take a trip to the elevator.
The plan worked. Dante earned eight tickets. His physicians captured critical data on his seizures. And word of an elevator-loving patient started to spread around the hospital.
Nine months later, Dante needed additional inpatient testing. Miller knew the stay would be especially challenging in the COVID environment. Wanting to position Dante for success, she enlisted colleagues around the hospital to help Dante meet his goals.
Engineering staff created a book about Boston Children's elevators for their biggest fan and persuaded their partners at Stanley Elevator to send Dante some swag.
Miller also tapped into his love for music, recruiting a music therapist to compose lyrics incorporating the behavior plan to Dante's favorite song, “Old Town Road.”
The interventions paid off, helping doctors as they continue to unravel the cause of Dante's seizures. Meanwhile, Olivia will continue devising plans to help other kids meet their care goals, and Dante can be found in his favorite elevator t-shirt crooning his song.
of caregivers for children with autism cited difficulties during hospital visits
ratio of inpatient board-certified behavior analysts to patients served in 2020
River's giggles are more than mischievousness, says mom Courtney. They reflect her strong desire to connect with those around her. Relationships motivate the toddler, and she has her own unique ways of building bonds with others.
River cannot speak, sit, stand or walk without support. When she was 2 months old, she began receiving early intervention services, including physical, occupational and speech therapy, from Boston Children's. The sessions have given River the tools—and more importantly, the confidence—to engage with the world.
Today, River communicates in her own way. She uses her eyes and, more recently, buttons she can reach with her hands, to indicate choices. She relishes the daily challenges of her inclusive preschool classroom.
In a recent Zoom class, River held a crayon in her hands, coloring as she moved it back and forth on a piece of paper. It was an incredible moment, says Courtney. “She was so proud of herself.”
When she's not encouraging her brothers' antics, River chases the rush of adrenaline. In a swing, she wants to go as high and fast as possible. She loves spinning around in a chair and gliding down a slide.
Courtney sees parallels between her daughter's incredible tenacity for life and the natural phenomenon whose name she shares. Undaunted by obstacles, both are on a journey—delighting those nearby as they chase an unseen destination.
early intervention sessions since March 2020
infants and toddlers served in 2020
At 10 years old, Lily has a tremendous passion for learning and technology. A master on her iPad, she's used the device to create her own ways of communicating with her parents and teachers. Elise (left), 8, lights up a room with her dancing and singing. Incredibly social, she wants to be part of everything happening around her.
But from an early age, the girls experienced troubling symptoms, ranging from significant language and motor skill delays to seizures. A diagnosis eluded the family until the girls underwent whole exome sequencing at Boston Children's. Elise and Lily were both found to have SYNGAP1 syndrome. In 2018, there were only 250 known cases of SYNGAP1 in the world. Now, there are more than 700.
Today, the family is part of a strong global community dedicated to advancing research and ensuring that children with SYNGAP1 succeed. Lily and Elise attend school, where they are learning new skills and gaining independence. Both girls receive subspecialized care at Boston Children's, and their diagnosis opens doors to future trials of targeted therapies for SYNGAP1. Grateful for the answers and support her family has received, Erin serves on Boston Children's Family Advisory Council—where she is helping others find their own paths.
Her goal? A world that celebrates and capitalizes on children's strengths and individual interests. “Sails will adjust as we go, but it's fun to picture what might give every child her best life.”
therapy created specifically for one child with rare disease
patient and family samples submitted for genetic sequencing since 2018
genetic counselors guide families
Around his first birthday, Adrian stopped meeting physical development milestones. He was diagnosed with spinal muscular atrophy type 2 (SMA type 2), a genetic disorder that affects the nerve cells that control voluntary muscles.
“It was devastating, but we were given hope,” recalls Adrian's mother Cassie. The FDA had approved the first SMA treatment—Spinraza—just months before Adrian's diagnosis.
Boston Children's researchers had participated in the clinical trial, which showed Spinraza could help the muscles and nerves of SMA patients work more normally. Adrian's doctors prescribed it immediately.
The treatment was life-changing.
“Before Spinraza, if you sat Adrian on the floor, he'd fall over. He couldn't roll over or crawl, so he would just be lying there. With every dose, he was doing more,” says Adrian's dad José.
After about a year and a half on Spinraza, Adrian's progress plateaued. His Boston Children's team suggested a clinical trial testing an experimental drug designed to enhance motor function in SMA patients.
“Now, he can push himself in his chair, play sled hockey or stand on his knees,” says José.
Although his days are packed with adventure and activity, Adrian still finds time to entertain friends and family. “You can rely on him to keep everybody laughing,” says Cassie.
A true performer, Adrian is building a loyal audience. His most recent venture is a YouTube channel for delivering delightful toy reviews.
Opening each video with an impish grin, he says, “Hi guys! It's me, Adrian.” Go ahead, Adrian, we're watching.
patients consented in one of ~330 active clinical trials
children with SMA enrolled
Alannah was diagnosed with Type 1 diabetes shortly before she started third grade. Her parents were shocked. And the required lifestyle changes—from checking her blood sugar before every meal to measuring portion sizes, counting carbs and taking insulin—were a major adjustment. But the challenges have taught Alannah new levels of resolve and persistence.
Support from Boston Children's diabetes program staff has been essential, helping Alannah and her family adapt to her condition.
Alannah now wears a continuous glucose monitor that sends alerts when she needs to eat or drink to combat plummeting blood sugar levels. The monitor also notifies caregivers when she may need additional insulin. And finally, the device introduced Alannah to the science of nutrition, making her more aware of how food choices impact health.
While Alannah recognizes the need to manage her blood sugar levels at all times, she's focused on being a “typical” third grader. When she's not in school, Alannah enjoys playing with friends and daydreaming about her future—and a career caring for sick children or entertaining them.
thriving youth with diabetes
families connected through diabetes program Facebook group
teens serve on advisory committee
Starting when she was 5 years old, the merest hint of a new freckle—tinier than the head of a pin—could send Ava into a tailspin. She'd scan her skin for the minutest change, which would inevitably lead to a fear that something was terribly wrong.
Ava's mom gave her a pink journal so she could record her worries. “At first it helped,” Ava, now 16, recalls. “And then it didn't.”
Home was the only place she felt relatively safe. By the time she reached fifth grade, Ava's anxiety had grown so intense she often missed school. When she did go, she sometimes became physically ill, and staff couldn't calm her.
Though Ava made friends easily, her condition limited play dates to her own home. Going to a friend's house or the mall was out of the question.
When Ava was in sixth grade, her parents brought her to a therapist near their home and to a psychiatrist at Boston Children's, who prescribed medication. Then, she was referred to a Boston Children's therapist. Her symptoms decreased—dramatically.
Along with newfound freedom from the worst of her anxiety, Ava has found strength as an advocate. She spoke at the Boston Children's 2019 State House Breakfast about the need for all children to have access to mental health resources.
Though the pandemic has sparked some resurgence of her symptoms, Ava is optimistic about the future. Medication and therapy curb her anxiety, and advocacy work empowers and heals her.
“Boston Children's has given me a voice. Today, I'm a warrior not a worrier.”
youth in crisis arrive to our Emergency Department every day
mental and behavioral health visits in hospital, clinic, virtual, school and community settings in FY 2020
Born with Down syndrome, Jackson first came to Boston Children's at 5 months old. His mom Wendy knew his breathing didn't sound right. Jackson was asleep on her shoulder when a specialist diagnosed his airway obstruction.
In the decade since, Jackson has cheerfully embarked on multiple surgeries to restore first his breathing and later his mobility. He has not simply endured; he has thrived in this community that he adores.
“When we tell Jackson it's time for a surgery, he can't wait to get it done so he can play in the game room,” says Wendy. Through a dozen operations, Jackson has soaked up every opportunity for fun and friendship.
Wendy says the days can feel long for families when a child is undergoing surgery, but Jackson's zealous embrace of Boston Children's makes every admission feel like an adventure. He dwells on the positive—for instance, the thrill of seeing dogs perform tricks in the patient entertainment center.
“Jackson was so excited to watch it,” says Wendy. When friends and family called to check in, Jackson skipped right to the point, shouting: “I'm going to a dog show!”
An easygoing fourth-grade student with a talent for bringing out the best in people, Jackson is constantly finding ways to grow the Boston Children's community—befriending patients in the game room, charming doctors and staff and even recruiting supporters to fundraisers. “People come from all over the world to go to Boston Children's. But for Jackson, it's just a home he loves, his second home,” says Wendy.
children with Down syndrome served
kids participate in inclusive yoga annually since 2013
free developmental resources provided to families through Mae's Market since 2018
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