September 20, 2021
The Annual Big Hearts Walk for St. Mary’s Kids and Family Fun Day is a terrific way for the St. Mary’s community to come together and raise critically needed funds that support vital programs and services for our patients.
St. Mary’s Healthcare System for Children is committed to improving the health and quality of life for children with special healthcare needs and their families. We are New York’s largest and most experienced provider of long-term care to children with medically complex conditions and continue to be New York City’s only post-acute care facility for children. At St. Mary’s, we aim to give our kids more than they dreamt possible.
To honor these courageous children, eight of St. Mary’s Kids have been selected to lead our Walk as Grand Marshals: Alessia, James, Adalynn, Sam, Easton, Gabriel, Adiv and Noah.
Learn about their remarkable journeys on their path to recovery below:
Alessia’s Story
In August 2020, Alessia was injured in a car accident and diagnosed with a spinal cord injury. To enhance her recovery, Alessia enrolled in St. Mary’s Locomotor Training Program, an intensive individualized therapy program that improves function in persons with spinal cord injury (SCI) and other neurological diagnoses. The interventions used focus on sending appropriate input to the nervous system so that the body can learn tasks such as sitting upright, standing, and walking. Alessia quickly adjusted to the program, and has made incredible progress so far! She can now walk and stand with less body weight support assisting her while keeping an appropriate posture, and has significantly improved her trunk control, making it easier to self-propel in her wheel chair and respond to challenges to her balance. Alessia loves to be silly during her sessions, often singing or dancing to music on the treadmill, and enthusiastically accepts all challenges that are presented to her. The Locomotor Training team and all of us at St. Mary’s admire her contagious smile, can-do attitude and hard work!
James’s Story
For James and his family, St. Mary’s Hospital for Children has been their lifeline. James is a 4-year-old boy who came to St. Mary’s with Apert’s Syndrome, a genetic diagnosis characterized by skeletal abnormalities. His complex medical condition has required advanced pediatric care far more complicated than his family can provide at home. While at St. Mary’s, he receives round-the-clock medical care to improve his ambulation, balance and endurance, and receives physical, occupational, and speech therapies to help him meet all of his early childhood milestones. James currently relies on a tracheostomy in his throat to help him breathe and recently had his feeding tube removed, meaning he can now can eat and take medication orally. James’s family and all of us at St. Mary’s are pleased with his progress and working towards having his tracheostomy removed so he can go home to his loving family.
Adalynn’s Story
Adalynn is an active 4 year-old girl who loves music! She was born with multiple birth defects of the trachea, esophagus, brain, and lungs, including absence of her left thumb and multiple anomalies of her head and face. Adalynn uses a special hearing aid called a BAHA, which utilizes bone conduction for hearing, to help her through her hearing loss. Adalynn is dependent on a tracheostomy in her throat to help her breathe and also his feeding tube for eating. Adalynn continues to make amazing strides each and every day, and is currently learning to walk and utilize language stimulation cause-and-effect toys to help her communicate more. All of us at St. Mary’s are so proud of Adalynn’s progress and hard work!
Sam’s Story
Sam came to St. Mary’s Center for Pediatric Feeding Disorders due to difficulty with his eating habits and nutrition. At the time of his admission, Sam was extremely restrictive in what he was willing to eat and would rather go without food altogether. As an aspiring professional soccer player, Sam would run out of energy on the pitch from not eating properly. His family and pediatrician were very concerned about Sam’s malnutrition.
After just 6 weeks of feeding therapy at St. Mary’s, Sam’s attitude towards food had completely transformed. He has since tripled the number of foods he is willing to eat, maintained all the new foods he added to his diet, and has learned how to talk about specific foods and what he likes and dislikes about each food. He has even started asking to try some new foods on his own!
For Sam and his family, the Feeding Program at St. Mary’s has been life-changing. Before he was discharged, Sam was known around St. Mary’s as “the kid with the soccer ball”. His ball went everywhere with him, and his time between feeding sessions was spent practicing his skills (as well as giving his main feeding therapist a hard time for supporting the “wrong” NYC soccer team!). Sam’s new balanced diet and regularly scheduled eating times are keeping his energy up and his mood even, allowing him to concentrate better in school, excel on the soccer field and give his family a greater peace of mind.
Easton’s Story
Easton currently participates with St. Mary’s Locomotor Training program to focus on neurorecovery following a spinal contusion. For five days per week, Easton completes intensive 90-minute therapy sessions to help him sit, stand, and walk with less assistance. These sessions include interventions such as walking on a body-weight supported treadmill or standing at a support surface with manual cueing provided by a physical therapist. Since Easton’s enrollment with St. Mary’s Locomotor Training, he has gained the strength to breathe and eat independent of a tracheostomy and a feeding tube—they were recently removed! He is now able to initiate steps and stand with very little support required. The team at St. Mary’s are so proud of Easton’s progress so far and we are thrilled to assist him achieve more milestones! Additional updates about Easton’s journey can be found on the family’s Facebook Page, “Home Runs For Easton”.
Gabriel’s Story
In 2020, Gabriel needed several surgeries at a North Carolina Hospital after receiving a traumatic head trauma, where he suffered from multiple fractures in his skull and internal bleeding. After his series of surgeries, Gabriel came to St. Mary’s Hospital for Children’s inpatient program for functional restoration rehabilitation.
At the time of his admission to St. Mary’s, Gabriel could only communicate non-verbally and he received his hydration and nutrition exclusively with his stomach feeding tube. Gabriel was unable to lift himself without assistance and suffered from poor balance. St. Mary’s amazing inpatient team has provided Gabriel with optimal nursing and rehabilitative care and has provided his grandmother with the training and education she will need to care for him when he returns home. Thanks to St. Mary’s team and Gabriel’s determination and strength, he has shown improvement in shifting his weight, regained some of his balance, and recently started eating and drinking by mouth.
Over the past 8 months, Gabriel has been able to communicate using a high-tech speech-generating device. He loves to make people laugh telling jokes. When Gabriel is discharged from St. Mary’s this month, he will be attending St. Mary’s Medical Day Health Care afterschool program and will receive skilled nursing visits, telehealth monitoring, and homecare rehabilitation through St. Mary’s.
Adiv’s Story
Adiv is a 10-year-old boy with dysautonomia, a medical condition that prevents his autonomic nervous system from working properly. This condition can affect the functioning of several organs, including the heart, bladder, intestines, sweat glands, pupils, and blood vessels. His food takes a very long time to travel through his body because the muscles of his digestive system have become impaired.
At St. Mary’s Hospital for Children, Adiv receives 24/7 care from St. Mary’s dedicated team of pediatric specialists, including physical therapists, recreational therapists, nutritionists, special education teachers, and many others. They ensure that Adiv receives medical support, clinical nutrition support, rehabilitation services, education, fun activities, and everything else they can provide to ensure that this young boy can have the happy, healthy and fulfilling life that he deserves..
When Adiv was admitted to St. Mary’s, he had a tracheostomy and a central line for nutrition purposes. He also had a gastrostomy-jejunostomy tube for his stomach and intestines because his stomach was unable to handle food or formula.
When Adiv was admitted to St. Mary’s, our team set out to help wean him from the tracheostomy so he could breathe on his own. Additionally, a goal was set to have him begin eating by mouth instead of a tube. Through his hard work, Adiv met these goals: he can now fully breathe on his own, and he can eat by mouth! The St. Mary’s team is all so proud of the progress he continues to make.
Noah’s Story
Two year old Noah was admitted to St. Mary’s Hospital for Children in 2020 for both long term and palliative care. When Noah was born, he suffered multiple complications at birth. Before he was admitted to St. Mary’s, he presented to Coney Island Hospital ER with a fever and tested positive for COVID-19. He went into cardiac arrest and had a poor prognosis. Noah relies on oxygen support to maintain his oxygen saturation level, and he is also dependent on a gastrostomy tube (stomach feeding tube) for nutritional and fluid requirements. His condition has caused decreased range of motion, so he has been placed on a stretching program, where our restorative nursing techs utilize passive range of motion activities to assist with tightening of his muscles and limbs. As part of our palliative care program, Noah receives massage therapy, therapeutic touch, aromatherapy, and music therapy. The team at St. Mary’s Hospital for children are so inspired by Noah and his hard work.
Children like Alessia, James, Adalynn, Sam, Easton, Gabriel, Adiv and Noah make incredible gains each day and continue to strive for excellence in meeting all of their rehabilitative and educational goals. Support them by joining us at the 2021 Big Hearts Walk for St. Mary’s Kids on Sunday, October 17, 2021, at the Bronx Zoo. You may register individually or as part of a team. Please consider inviting your family, friends, neighbors and co-workers to walk with you. If you are not able to join us, perhaps you would consider making a donation or being a virtual walker.
