UPDATES:
I am SO EXCITED to announce I have been OFFICIALLY accepted to run the 129th Boston Marathon for Boston Children’s Hospital (BCH)- Miles for Miracles Team!
As a Registered Nurse in the Acute Cardiac Care Unit, I have the privilege of caring for the strongest, toughest, bravest and most resilient little heart warriors.
I am honored to be officially partnered with a beloved patient of mine, Demi Costa.
Born at 37 weeks, 5 lbs. Demi was hospitalized several times due to multiple infections and complications, ultimately leading to a diagnosis of APLAID at age 1.
Demi's condition is a rare, life-threatening genetic disorder, where she has the most serious case ever seen throughout the country.
APLAID impacts every part of Demi’s little body, causing chronic lung disease, focal seizures, one functioning kidney, cardiac catheterizations, chemotherapy for symptom management, numerous infusions and immunosuppressants.
Fast forward to Summer 2024, her most recent complication of APLAID resulted in an 11-week admission recovering from open heart surgery this past summer.
After exhausting all treatment options, Demi needed a Bone Marrow Transplant (BMT), a process that takes weeks to prepare for and can take weeks for engraftment after transplant.
November 17th, 2024- Demi checked into BCH to prepare for her BMT.
November 27th, 2024- HAPPY TRANSPLANT DAY DEMI!
After a long and tough nine days Demi reached her Rebirth-day. It was a day full of emotions. Excited, nervous, scared and hopeful. Excited for Demi’s second chance at life and hopeful that her body accepts these stem cells. Her dad, Jon is her donor. Her own personal hero. ♥
December 20th, 2024- DEMI IS DISCHARGED HOME!
She amazed everyone with her resilience throughout the transplant process, showing just how strong and determined she is. Her walk-out song that day was “ We Will Rock You,” which couldn’t have been more fitting.
January 1st, 2025-
Unfortunately things took a turn New Year’s Day, Demi had a fast heart rate, and fast breathing. She was admitted and diagnosed with Pneumonia and Adenovirus, a combination that her body, without its usual defenses, was struggling to fight. She was initially placed on BiPap.
January 6th, 2025-
Demi’s condition worsened, and she was intubated. She was critically ill and at a high risk of needing life support.
January 13th-2025
Heartbreaking Update on Demi
It is with the heaviest of hearts that we share the devastating news that Demi passed away on January 13th, 2025.
Over the past weeks, Demi fought with a strength and courage that inspired everyone around her. Despite every effort made by her incredible medical team and the unrelenting love and support of her family, her body could no longer keep up with the challenges she faced.
Demi was the embodiment of joy and determination, a true sour patch of you will, with a zest for life that could make anyone smile. She was spunky and full of personality, always keeping everyone on their toes with her quick wit and silly antics. One moment, she’d flash her mischievous grin, plotting her next hilarious prank, and the next, she’d melt hearts with the sweetest hug or unexpected “I love you.”
Her sense of humor was unmatched—she could turn the most ordinary moment into a laugh-out-loud venture. Demi had a knack for saying the funniest things at just the right time, and her infectious belly laugh could brighten even the darkest days.
At her core, Demi was so fiercely brave and resilient, facing challenges with a strength that inspired everyone around her. She was a little warrior, never backing down from a fight and always surprising people with her grit.
But don’t let her sweetness fool you—Demi had a sassy streak that made her even more lovable. She wasn’t afraid to speak her mind or let you know exactly how she felt, all with a cheeky smirk and a twinkle in her eye.
Demi was a shining example of what it means to be strong, brave, and full of life. She may have been small, but her spirit was larger than life, leaving an unforgettable impact on everyone she met.
Her family wants to express their deepest gratitude to everyone who has prayed, sent love, and supported Demi throughout this journey. Your kindness and compassion mean the world to them and will never be forgotten.
While Demi is no longer with us, her legacy of strength, love, and joy will live on forever. Please keep her family in your thoughts and prayers as they navigate this heartbreaking loss.
Thank you for being a part of Demi’s journey and for surrounding her and her family with love.
I have had the privilege of getting to know Demi and Demi’s family. Their strength, support, love and perseverance is unmatched.
Demi’s story, like so many others, is filled with challenges, but the care and support she’s receiving at Boston Children’s Hospital give her a fighting chance.
Demi’s courage and determination inspire me each day, and I am running this race to celebrate her strength and resilience.
This journey is dedicated to not only Demi but all those who face challenges with unshakable resolve—your spirit fuels me to keep going, step by step.
To say I am honored and proud to run for Demi, Demi’s family, and all the children/patients battling serious health conditions would be an understatement.
Please consider supporting my run with a donation to Boston Children’s Hospital, so that kids like Demi and others can continue to receive the life-saving care they deserve.
Every dollar helps and brings us one step closer to making a difference.
#BostonMarathon2025 #RunForDemi #StrongBraveResilient #BostonChildrensHospital #MilesForACause
#milesformiracles #APLAIDawareness #congentitalheaartdisease #CHDwarrior
