Archive for Katie Paradis
A partner through amniotic band syndrome: Jace’s story
Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — ... Read More about A partner through amniotic band syndrome: Jace’s story
Guided by her own experience, one mom navigates Stickler syndrome with her children
Aimee is more than just Mum to three-year-old Arwen and one-year-old Cedric; she’s their guide to navigating Stickler syndrome, a genetic connective tissue disorder that can cause an underdeveloped jaw and airway obstruction (collectively known as Robin sequence), as well as cleft palate, vision and hearing difficulties, and other findings. As a carrier herself, Aimee ... Read More about Guided by her own experience, one mom navigates Stickler syndrome with her children
Optimal care, lower costs: Examining the benefits of out-of-network care for pediatric moyamoya
Moyamoya disease is a rare condition that affects the blood vessels in the brain, especially in children. Narrowing and blockage of vessels significantly increases the risk of stroke and requires surgical revascularization for treatment. Although research shows that outcomes of revascularization are better at high-volume centers, insurers often hesitate to approve out-of-network care. However, a ... Read More about Optimal care, lower costs: Examining the benefits of out-of-network care for pediatric moyamoya
Celebrating the unexpected, Miley’s family navigates Apert syndrome
Miley is the first girl born into her family in almost a generation. Hearing the delivery team announce, “It’s a girl,” is a moment her mom, Nicole, and her dad, Mike, will always remember. “We just cried,” says Nicole. “I’ll never forget that moment.” But what they also discovered at delivery was something else they ... Read More about Celebrating the unexpected, Miley’s family navigates Apert syndrome
Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
Shannon’s journey through a challenging pregnancy with TTTS (twin-twin transfusion syndrome) was, as she puts it, an emotional rollercoaster. In addition to the usual first-time parent jitters and the unexpected news of twins, Shannon and Mike navigated the emotional ups and downs of the rare pregnancy complication. TTTS put their twins at severe risk of ... Read More about Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
Rowan the Remarkable: Defying the odds with CPAM
This is the story of a baby named Rowan and his remarkable journey of beating the odds after doctors discovered a potentially fatal mass on his lung in utero. This is also the story of his mother, Casey, who fought for him every step of the way, and the medical professionals whose collaboration and planning ... Read More about Rowan the Remarkable: Defying the odds with CPAM
It takes a village and the world: Tariq’s care for Tourette syndrome
When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq ... Read More about It takes a village and the world: Tariq’s care for Tourette syndrome
Care for a prince: One family’s inspiring journey for encephalocele repair
To hear Peter and Eunice of Kenya tell the story of their son, Prince, is to hear about the power of hope, the best of humanity, and the interconnectivity that makes the world a small place after all. Hope in the hopeless In March 2022, Eunice was about five months into her pregnancy when a ... Read More about Care for a prince: One family’s inspiring journey for encephalocele repair
Writing the book on infantile spasms: Charlotte’s story
When Charlotte, 3, developed infantile spasms last year, her parents, Kate and Brett, entered a world they didn’t know how to navigate. Inspired by their daughter and the care she received at the Epilepsy Center at Boston Children’s Hospital, they set out to help other families facing similar experiences. Nervous parent instincts prove right “I ... Read More about Writing the book on infantile spasms: Charlotte’s story
All in the family: One family’s shared link to epilepsy and fight for answers
One of the wonders of parenthood is seeing the traits you pass along to your kids, like your eyes or your laugh. For the Anderson family, however, one shared trait is more complex: a mutation in the NPRL3 gene that leads to epilepsy. It took four generations to uncover the family’s genetic link to the ... Read More about All in the family: One family’s shared link to epilepsy and fight for answers