Pages tagged "Family Advocacy Day"


Meet Alison: 2017 Speak Now for Kids Family Advocacy Day Hero

Alison’s life is an example of the transformative power of children’s hospitals. As a nine-year-old, Alison was diagnosed with a rare liver disease called Primary Sclerosing Cholangitis (PSC) and Crohn’s disease. She battled these two conditions for ten years before receiving a liver transplant at Yale New Haven Children’s Hospital (YNHCH).

Without YNHCH “I would not have gotten the care that I needed or access to the specialists that were needed to care for me,” says Alison.


Meet Wesley: 2017 Speak Now for Kids Family Advocacy Day Hero

Wesley was only 6 days old when he underwent his first of five heart surgeries. When he was 18 months old, Wesley received a heart transplant. This new heart has given Wesley the ability to live a life of adventure. Now as a joyful 3-year-old, Wesley is a living example of the incredible work that children’s hospitals perform every day.


Meet Brianna: 2017 Speak Now for Kids Family Advocacy Day Hero

Brianna was born a normal healthy baby. At the age of 6 she was diagnosed with scleroderma, a rare disease that usually affects women between 30 and 50 years old resulting in the chronic hardening of skin and connective tissues. As time passed, the doctors diagnosed her with several other life-changing autoimmune diseases.

Her illnesses brought her several challenges, keeping her homebound from attending school, hanging out with her friends and going to the park. Somehow she has been able to keep her faith and keep fighting. Now 12 years old, Brianna brings joy to everyone she meets with her beautiful smile, singing and jokes.


Meet Parker: 2017 Speak Now for Kids Family Advocacy Day Hero

Parker is the happiest 8-year-old boy you could hope to meet, and his personality shines bright. You would never know by looking at him he was born with only half a heart.

During a routine 20-week ultrasound, the technician had a hard time getting a good look at Parker’s heart, so his mother, Casey, had to return two weeks later to give it another try. She left that appointment not knowing anything was wrong until she received a call to schedule a genetic study and a fetal echocardiogram with a high-risk obstetrician (OB).


Meet Evan B.: 2017 Speak Now for Kids Family Advocacy Day Hero

Evan is an inspiring and adventurous first-grader who has spent an aggregate of two and a half years of his life in the hospital. His mother, Alison, remembers  going into her 23-week ultrasound eager to see the baby’s fingers and toes. Her doctors, however, returned with some critical news — Evan had kidney failure and was not producing amniotic fluid. Without amniotic fluid, Evan would be unable to develop lungs. Without lungs, it would be impossible for Evan to survive. Alison asked the doctor if she should pray for a miracle, and he responded frankly: “there is no miracle. Your child has zero percent chance of survival outside of the womb.”


Meet Apollo: 2017 Speak Now for Kids Family Advocacy Day

Apollo was diagnosed prenatally and born with esophageal atresia — a rare malformation of his esophagus — and tracheomalacia — a very rare and more complicated malformation of his trachea. He spent the first six months of his life in three different Neonatal Intensive Care Units. Many of these days were spent in great pain, critical condition, or sedated and paralyzed. Thanks to the pediatric surgeons and physicians at Cincinnati Children’s Hospital and Dell Children’s Hospital, Apollo’s trachea was successfully rebuilt and his esophagus was repaired.


Meet Noble: 2017 Speak Now for Kids Family Advocacy Day Hero

Noble, 6 years old, is described as “an old soul,” and a patient child that displays great joy. Since birth, Noble has always done his best and tried his hardest to overcome all the difficult things life has tossed his way. At just 3 days old, Noble was diagnosed with Prader-Willi Syndrome (PWS) after being taken to the neonatal intensive care unit.

His mom, Crystal, describes how she and his dad, Jameson, were “devastated” when they were told of the diagnosis


Meet Steve: 2017 Speak Now for Kids Family Advocacy Day Hero

Meet Steve: 2017 Speak Now for Kids Family Advocacy Day Hero

Excerpted from Children’s Hospital of Wisconsin Blog

When Steve’s mom, Molly, was 20 weeks pregnant, her OB/GYN discovered abnormalities in Steve’s heart. He immediately referred Molly to Children’s Hospital of Wisconsin, where she and her husband Matt discovered Steve would be born with five different congenital heart defects — an unusual and difficult diagnosis.

“Our own hearts were breaking as we discovered our son’s special heart,” says Molly. But the doctors and specialists at Children’s Hospital of Wisconsin monitored Molly closely, kept the family informed and offered hope and encouragement.


Meet Emily: 2017 Speak Now for Kids Family Advocacy Day

Emily began showing symptoms when she was just 6 months old. But, it wasn’t until she was 6 and started falling in school two or three times a day that Emily’s doctors asked if anyone had ever done an MRI on her. She was diagnosed with chiari malformation, a condition in which brain tissue extends into the spinal canal, present at birth. She was subsequently diagnosed with tethered cord and Elhers Danlos Syndrome.


Meet Jaylyn: 2017 Speak Now for Kids Family Advocacy Day Hero

Just hours after she was born, Jaylyn was diagnosed with trachea esophageal fistula and esophageal atresia (EA-TF), a condition resulting from abnormal development before birth of the tube that carries food from the mouth to the stomach. With this confirmed, the newborn was immediately transferred to a specialized neonatal intensive care unit (NICU), which was equipped to care for a newborn with her condition.

“We were scared to death, in complete shock and heartbroken. We could hardly pronounce 'Trachea Esophageal Fistula and Esophageal Atresia' and had never heard of it before,” said Jaylyn’s mom, Crystal. “We couldn't imagine how a baby could be born without an esophagus, much less survive without one.”


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