Dancing David

Conquering Cerebral Palsy with Physiatry, Physical Therapy and K-Pop
“He’s a firecracker that walks to the beat of his own drum.” Akua Genfi speaks with pride about her confident and charismatic nine-year-old son, David, who is always excited to meet new people, say “hello” and spark up a conversation. For almost half his young life,...

Tags:

  • Complex Post-Surgical Rehabilitation
  • Neuromuscular Disorders
  • Cerebral Palsy (CP); obstructive congenital hydrocephalus; endoscopic third ventriculostomy; spasticity; botox injections; dorsal rhizotomy;

Talented Trejah

Dancer Dazzles with Emotional Encore After Beating Brain Tumors, Stroke
“Since I was little, dancing was everything to me.” The spotlight shined brightly on Trejah as a young, talented performer. Before even becoming a teenager, she had taken the stage numerous times in ballet and dance, even joining the famed Alvin Ailey American Dance Theater at Lincoln...

Tags:

  • Acquired Brain Injury
  • Juvenile Pilocytic Astrocytoma; seizure disorder; stroke; paralysis; cognitive impairments; brain tumor

Tara's Triumph

Teen's Fierce Determination for Independence Drives Assistive Technology Training
The will to fight was instilled in Tara ever since day one. Born a premature triplet at 26-weeks and weighing just under two-pounds, she required resuscitation in the delivery room and was put on a life-sustaining ventilator for weeks while undergoing numerous surgeries and medical procedures to...

Tags:

  • Assistive Technology
  • Complex Post-Surgical Rehabilitation
  • Neuromuscular Disorders
  • Extreme Prematurity
  • Cerebral Palsy (CP)
  • spastic quadriplegia

Brave Bentley

Health Home Helps Medically Complex Boy & Family Thrive in Community
Bentley is more than meets the eye. He’s more than the power wheelchair that keeps him moving. He’s more than the ventilator that keeps him alive. He’s more than the assistive technology that helps him communicate. “He is the bravest kid in the world and an inspiration for...

Tags:

  • Neuromuscular Disorders
  • Complex Chronic Conditions
  • Pulmonary Rehabilitation
  • Assistive Technology
  • Specialized Feeding
  • Complex Post-Surgical Rehabilitation
  • nemaline myopathy
  • Scoliosis
  • Chronic Respiratory Failure

A Different Daniel

From Failure to Thrive to Specialized Feeding Program Pride
Slow and steady wins the race. A mantra that Blythedale Children’s Hospital patient, Daniel, his family and medical/clinical teams have lived by for the past few years. Since his birth four years ago, eating has been an obstacle for Daniel. He was initially breastfed, but had difficulty...

Tags:

  • Eosinophilic Esophagitis/EoE
  • Failure to Thrive/FTT
  • Food Allergies
  • Asthma
  • Autism
  • Feeding Delays
  • Speech Delays

Rocky's Big Game

Walking into a major league ballpark is often an impressive sight to see, but for one Blythedale Children’s Hospital patient and his family, attending a recent baseball game held even more meaning. Nine-year-old Rocky, a previously healthy and active child, suffered a stroke in July. He was...

Tags:

  • Acquired Brain Injury
  • Neuromuscular Disorders
  • Stroke

Independent Amanda

Teen Triumphs at Blythedale with Technology, Tenderness and Time
Graduation is a time to reflect on past achievements while looking ahead to new beginnings. For one special 12th grader at the Mt. Pleasant-Blythedale School, located on the grounds of Blythedale Children’s Hospital, her future is paved with potential. “I will be moving to a new house...

Tags:

  • Assistive Technology
  • Complex Chronic Conditions
  • Otopalatodigital Spectrum Disorder
  • Cochlear Implant
  • Scoliosis
  • Diabetes
  • Blind
  • Deaf

Hope for Hiroshy

Former Preemie with Jejunal Atresia Grows Into Promising Pupil
From the start of his life, Hiroshy and hospitals have gone hand in hand. Born premature at 33-weeks’ gestation in October 2011, Hiroshy was diagnosed with jejunal atresia (an incomplete formation of part of the small intestine), and spent 90 days in the NICU. The newborn underwent numerous...

Tags:

  • Complex Chronic Conditions
  • Specialized Feeding
  • Pre/Post Organ & Stem Cell Transplant
  • Post Acute Neonatal Care
  • Assistive Technology
  • Extreme Prematurity
  • Short Gut Syndrome
  • Total Parenteral Nutrition (TPN)

Malka on the Mend

LVAD Dependent, Pre-Transplant Patient Returns After Cardiac Surgery
“I’ve never had a child, who’s had a major organ transplant, come back so quickly.” Dr. Mary Didie, Unit Chief of the Day Hospital Program at Blythedale Children’s Hospital, proudly uttered those words upon the return of nine-year-old Malka in March 2018, less than...

Tags:

  • Cardiac Rehabilitation
  • Pre/Post Organ & Stem Cell Transplant
  • LVAD
  • Heart Transplant
  • Stroke

Wondrous Wadeem

International Heart Transplant Patient's Journey Spans Continents for Cardiac & Pulmonary Care
How far would you go for the best medical care for your child? For five-year-old Wadeem and her family, the answer was half a world away. Diagnosed with complex congenital heart disease at birth, Wadeem underwent multiple cardiac reparative surgeries in her home country of Saudi Arabia and, later,...

Tags:

  • Pre/Post Organ & Stem Cell Transplant
  • Cardiac Rehabilitation
  • Complex Post-Surgical Rehabilitation
  • Complex Chronic Conditions
  • Congenital heart disease
  • Chronic Lung Disease

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