Jun 10

Family Advocacy Day Hero -- Meet Awo O.

Awo O., Age 14  
Hometown: Dayton, OH
Hospital: Dayton Children’s Hospital, Dayton, OH

 

Awo’s smile can light up a room. Whether she is acting, singing or playing volleyball, this active teen has a bubbly personality and fun loving attitude that rubs off on everyone she comes into contact with. She has learned to overcome her sickle cell disease with a positive attitude and, alongside her mom, is helping to pave the way for better treatment for adult sickle cell patients.

Jun 09

Family Advocacy Day Hero -- Alyssa M.

Alyssa M., Age 8 Alyssa M.2.jpg
Hometown: Chicago, IL
Hospital: Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL

Alyssa is an outgoing and dynamic 8-year-old girl, who loves fashion, dancing and hanging out with her older brothers and sisters.

Jun 08

Family Advocacy Day Hero -- Robert L.

Robert L., Age 18  Robert L
Hometown: East Greenwich, RI
Hospital: Boston Children’s Hospital, Boston, MA

You can’t tell by looking at Robert — a healthy, happy 17-year-old — that he has endured 16 surgeries in his life. 

Jun 07

Family Advocacy Day Hero -- Emmy K.

Emmy K., Age 7  Emmy K
Hometown: Plano, TX
Hospital: Children’s Medical Center Dallas, Dallas, TX

One day, at age 3, Emmy woke up without the ability to walk or speak. After several tests, she was diagnosed with acute disseminated encephalomyelitis (ADEM), a rare disease that aggressively attacked the healthy tissue in her brain. Emmy was placed into a medically-induced coma and was at Children’s Medical Center Dallas for more than a month. Thanks to the expertise of the hospital’s clinical care team, Emmy survived her life-threatening medical episode.

Jun 06

Family Advocacy Day Hero -- Meet Keely J.

Keely J., Age 3   Keely J
Hometown: Ormond Beach, FL
Hospital: Wolfson Children’s Hospital, Jacksonville, FL

Immediately after a premature birth, Keely was rushed to the Level III neonatal intensive care unit at Wolfson Children’s Hospital. She weighed only 2 pounds, 8 ounces and was diagnosed with Pierre Robin syndrome, a congenital condition that causes her to have a smaller-than-normal lower jaw and a tongue that falls back in her throat. Her tongue condition can obstruct her airway and causing difficulty breathing; it can also interfere with swallowing and feeding.

Jun 05

Family Advocacy Day Hero -- Meet Christopher E.

Christopher E., Age 4 Christopher E.jpg
Hometown: Howell, NJ
Hospital: The Children’s Hospital of Philadelphia, Philadelphia, PA

Christopher needed a new heart, and soon. The doctors at The Children’s Hospital of Philadelphia (CHOP) knew this was a possibility for Chris before he was even born. While still in the womb, Chris was diagnosed with abnormal aortic and mitral valves, a rare form of congenital heart disease. He underwent in utero surgery to open the aortic valve; the doctors hoped the catheter intervention would allow his heart to develop and function more normally.

Jun 04

Family Advocacy Day Hero -- Meet Faith H.

Faith H., Age 7FaithH.JPG
Hometown: Cincinnati, OH
Hospital: Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

Doctors didn't expect Faith to survive delivery but she was stronger than they thought. She had her first open heart surgery at 6 months of age to repair a congenital heart defect known as ventricular septal defect

Jun 03

Family Advocacy Hero -- Ayden H.


Ayden H., Age 9Ayden H.
Hometown: Cincinnati, OH
Hospital: Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

Ayden was a happy, developmentally-normal, healthy 4-year-old, when his parents started to notice that his leg would kick out to the side when he walked and his hand had tremors. His parents took him to the hospital where doctors performed a muscle biopsy on his leg and a MRI scan of his brain. Ayden was diagnosed with Leigh’s Disease, an incurable mitochondrial disease.

Jun 02

Family Advocacy Day Hero -- Meet Madison H.

Madison H., age 7 MadisonH.jpg
Hometown: Mankato, MN
Hospital: Gillette Children’s Specialty Healthcare, St. Paul, MN

 

Madison is a precocious first grader with a love of music. She knows the lyrics to every Taylor Swift song, participates in ballet, and learned to play piano before she could read.

Jun 01

Family Advocacy Day Hero -- Samantha D.

Samantha D., Age 6 Samantha D.

Hometown: Chicago, IL

Hospital: Rush Children’s Hospital, Chicago, IL

 

Born at 25 weeks, and 5 days, and weighing only 2 pounds, 2 ounces, Samantha was on a ventilator for the first six weeks of her life. Due to her prematurity, Samantha underwent two surgeries and also suffered from bleeding in the brain ventricles which resolved during the 14 weeks she lived at Rush University Medical Center. 

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