Pages tagged "Family Advocacy Day"


2016 Speak Now For Kids Family Advocacy Day Hero: Capri

Levine_Childrens_Hospital_Reece_Capri.jpgWhen she was just 13 days old, Capri was diagnosed with sickle cell anemia. From urgent care during a sickle cell crisis to follow-up care post-hospitalization, Capri has spent numerous days and nights at Levine Children’s in Charlotte, NC receiving exceptional care. Today Capri’s condition is stable, but she continues to receive treatment for sickle cell anemia as well as asthma.


2016 Speak Now for Kids Family Advocacy Day Hero: Maren

rsz_university_of_iowa_childrens_hospital_denison_maren_photo.jpgMaren and her twin brother Berne, who both have cystic fibrosis, had a difficult start in life. Born prematurely, due to an intestinal obstruction, Maren has struggled with weight gain and bowel obstructions. To monitor her health and keep up with her treatments, Maren has to visit University of Iowa Children's Hospital at least six times a year.


2016 Speak Now For Kids Family Advocacy Day Hero: Javier

rsz_gillette_childrens_specialty_healthcare_hruza_javier_photo.jpgA patient at Gillette Children’s Specialty Healthcare since the age of 2, Javier sees more than a dozen specialists for management of spastic quadriplegia cerebral palsy—the most severe form of the condition. He also has epilepsy, dysautonomia and neuromuscular scoliosis.


2016 Speak Now For Kids Family Advocacy Day Hero: Chloe

rsz_arkansas_childrens_hospital_allen_chloe_photo.jpgWeighing 1lb 5oz, Chloe and her triplet brother and sister were born at just 25 weeks. After 196 days in the Arkansas Children’s Hospital neonatal intensive-care unit (NICU), she came home with oxygen, a feeding tube, a pulse oximeter and numerous medications.


2016 Speak Now for Kids Family Advocacy Day Hero: Kayleigh

rsz_mt_washington_pediatric_hospital_klatt_kayleigh_photo.jpgKayleigh was born 14 weeks early at Mercy Medical Center, the 24th smallest baby ever born in the US. At 4 ½-months-old, she was transferred to the intensive care unit at the University of Maryland Medical Center, and was finally moved to Mt. Washington Pediatric Hospital (MWPH) when she was 8 months of age for long-term rehabilitation. Using the hospital’s simulation lab, Kayleigh’s parents were taught how to care for their daughter with special needs, preparation they needed as they prepared to take her home.


2016 Speak Now For Kids Family Advocacy Day Hero: Berne

rsz_university_of_iowa_childrens_hospital_denison_berne_photo.jpgBerne and his twin sister Maren, who both have cystic fibrosis, had a difficult start in life. Born prematurely, due to an intestinal obstruction, Berne has struggled with weight gain and bowel obstructions. To monitor his health and keep up with his treatments, Berne has to visit University of Iowa Children's Hospital at least six times a year.


2016 Speak Now for Kids Family Advocacy Day Hero: Maddy

rsz_childrens_national_medical_system_garrett_madison_photo1.jpgFrom a very early age, Madison "Maddy" possessed a very strong character and brought lots of laughter and smiles to just about everyone that she met. At the age of 3, Madison embarked on a life changing journey that was also beyond her years, a battle with cancer. After a series of tests she was diagnosed with stage 4 high risk neuroblastoma. Further bone scans revealed that the cancer was not only in her abdomen, but also in her lower spine, her shoulders and her hips and she was given only a 30 percent chance at survival.


2016 Speak Now For Kids Family Advocacy Day Hero – Arielle

rsz_boston_childrens_hospital_beaulieu_arielle_photo.jpgArielle was born seemingly healthy in 2013 but a CT scan eight days after her birth revealed an enormous brain tumor. Her parents were told that the mass was untreatable and to take her home under hospice care. Unsatisfied with this prognosis, they turned to Boston Children’s Hospital for a second lifesaving opinion.


2016 Speak Now For Kids Family Advocacy Day Hero: Miles

rsz_childrens_of_alabama_brown_miles_photo.jpgDiagnosed with rheumatoid arthritis at just 3 years of age, Miles had limited mobility and lived in endless pain. On the worst days, he would have to use a wheelchair at school. Despite this, he was always brave and upbeat. Widely considered an “older person’s disease” rheumatoid arthritis is the most common type of arthritis in children under the age of 17.


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