Jun 19

Family Advocacy Day First Person -- Brandon's Story

‘Never Give Up, Never Back Down, and Never Lose Faith’   Brandon

By Sheri Wittrock

Our son Brandon, now 17, was born at just 25 weeks gestation and weighed only 1 pound, 13 ounces. As Brandon struggled with multiple health issues, including cerebral palsy (a movement disorder that results from brain damage at birth) and hydrocephalus (excess fluid on the brain), we struggled to get the answers we needed. We were suddenly faced with questions, fears and lifestyle changes we had never anticipated. For instance, one doctor told me that if I didn’t stay home with Brandon (I was employed full-time prior to his birth) he would likely pass away.

Jun 19

Family Advocacy Day Hero -- Meet Jaden V.

Jaden V., Age 5 JadenV.jpg
Hometown: Tampa, FL
Hospital: St. Joseph’s Children’s Hospital of Tampa, Tampa, FL

Jaden is a sweet, loving and happy boy who enjoys swimming, soccer, tae kwon do, and going to school. He was born with hypoplastic left heart syndrome, a congenital heart defect in which the left side of the heart is severely underdeveloped. At just 4 days old, Jaden underwent open-heart surgery. Since then, he has undergone two additional open-heart surgeries, several catheterizations, the insertion of a gastric feeding tube, and months of physical rehabilitation.

Jun 18

Family Advocacy Day Hero -- Meet Zion T.

Zion T., Age 13 ZionT.jpg
Hometown: Summerville, SC
Hospital: Children’s Hospital Medical University of South Carolina, Charleston, SC

Zion became known as “The Mayor” when he introduced himself to all the neighbors in his new community. He loves to play football and soccer and enjoys being outdoors with his peers pursuing any physical activity he can find time for before curfew. One would never guess that behind Zion's jovial smile and athleticism is a young man living with sickle cell anemia, a disorder where the red blood cells are shaped like sickles (crescents), making it harder for the red blood cells to carry oxygen throughout the body.

Jun 18

Family Advocacy Day is Almost Here

Next week, 28 families representing 26 children’s hospitals from across the nation will be on Capitol Hill meeting with their members of Congress to talk about the importance of comprehensive pediatric health care.  Did you know you have an opportunity to join these families to raise your voice from the comfort of your own home? 

Jun 17

Family Advocacy Day First Person -- Kara's Story

By: Linda Waddell-Salvetti, Kara's mom 

Salvetti.Kara.jpgIt is truly a pleasure for us to be Kara’s parents.  It has been a long journey that has brought us to this place of peace and understanding. Together with the support of our team of doctors and a caring and wonderful special needs school our lives are almost as routine as any other family. 

Jun 17

Family Advocacy Day Hero -- Meet Cole S.

Schuhmann.Cole.jpgCole S., age 16  
Hometown: Louisville, KY
Hospital: Kosair Children’s Hospital, Louisville, KY

Sixteen-year-old Cole was born with a severe-to-profound hearing loss, but has been mainstreamed into a regular classroom since kindergarten. He is currently a sophomore at St. Xavier High School and is a straight “A” honor student. 

Jun 16

Family Advocacy Day Hero -- Meet Kara S.

Kara S., Age 15  KaraS.jpg
Hometown: Berkeley Heights, NJ
Hospital: Children’s Specialized Hospital, New Brunswick, NJ

Born by emergency Caesarian section after it was discovered that her fetal heart rate dropped, Kara suffered an 80 percent blood loss and wasn't expected to survive. Due to the loss of oxygen, she suffered immediate onset of seizures at birth, had kidney failure and was diagnosed with failure to thrive. 

Jun 15

Family Advocacy Day Hero -- Meet Madison S.

Madisen Maree S., Age 10  MadisenS.JPG
Hometown: Southaven, MS
Hospital: Le Bonheur Children’s Hospital, Memphis, TN

When she was 3 months old, Madisen was diagnosed with hydrocephalus, a condition which causes excessive accumulation of fluid in the brain. At age 2, Madisen started complaining of headaches about twice a week and went to several specialists in different fields before being properly diagnosed at Le Bonheur Children’s Hospital. Despite having both a ventricular-peritoneal shunt and a lumbar-peritoneal shunt to help divert the flow of excessive fluid, Madisen faces her challenges with courage and is still a straight “A” student.

Jun 14

Family Advocacy Day Hero -- Meet Zoni R.

Zoni R., Age 4  
Hometown: Marysville, OH
Hospital: Nationwide Children’s Hospital, Columbus, OH

When Zoni was 3 years old, what was supposed to be a fun camping vacation to Michigan soon turned into an unforgettable tragedy. Zoni and her family were around the campfire when, while playing with her brother, she turned too quickly, lost her balance and fell into the fire. She suffered severe burns on her legs, bottom and one of her arms. She was stabilized at a hospital in Michigan and then transported to Nationwide Children’s Hospital, where she was an inpatient for 33 days, 6 days of which she spent in an induced coma. 

Jun 13

Keeping Kids Healthy Should Be a Slam Dunk!

The Children’s Hospital Association and other pediatric champions hosted a briefing today for congressional staff about   Medicaid and the Children’s Health Insurance Program (CHIP).  The briefing addressed the populations served by each program, benefits and services offered, and the future of children’s coverage.

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