Pages tagged "Family Advocacy Day"

2016 Speak Now For Kids Family Advocacy Day Hero: Justine


Up until age 12, Justine had lived an extremely active lifestyle. She loved to practice Kung Fu, play basketball/swim and ride horses in her free time. But a diagnosis of acute lymphoblastic leukemia (ALL) changed all that, robbing her of many of her favorite pastimes; Justine received treatment for ALL primarily at Levine Children’s Hospital in Charlotte, NC. Since her diagnosis she has endured six major surgeries in addition to two and a half years of intensive chemotherapy. As a result of the harsh treatment her condition required, Justine was later diagnosed with bone tissue death, known as osteonecrosis, as well as neurocognitive deficit. 

2016 Speak Now For Kids Family Advocacy Day Hero: Lakota

rsz_st_josephs_childrens_hospital_lockhart_lakota_photo.jpgAt birth, Lakota was admitted to the neonatal intensive care unit (NICU) at St. Joseph’s Children’s Hospital of Tampa. He was diagnosed with an extremely rare condition known as congenital central hypoventilation syndrome, a central nervous system disorder which causes Lakota’s breathing to stop when he falls asleep. Lakota’s doctors performed two major surgeries and numerous diagnostic tests during his 68-day stay in the NICU, which required inserting breathing and feeding tubes. Then, Lakota’s care was transitioned to St. Joseph’s Chronic-Complex Clinic where he receives care from a team of multiple pediatric specialists. This clinic functions like a medical home, providing access to numerous providers as well as expertly coordinating Lakota’s care.

2016 Speak Now For Kids Family Advocacy Day Hero: Coral


Coral, and her identical twin sister Casey, were born nearly three months ahead of their mother’s due date at Women & Children’s Hospital of Buffalo. In addition to the “normal” preemie complications, Coral was born with free air in her abdomen and a tethered spine. When she was just 6-days-old, Coral had a major surgery to remove the free air, which resulted in a ruptured appendix requiring further care. Miraculously, Coral recovered from this procedure only to endure an even more severe procedure later during her stay in the neonatal intensive care unit. 

2016 Speak Now For Kids Family Advocacy Day Hero: Avery


Avery Wilson would not be alive today if it was not for the care he received at Children’s Hospital of Wisconsin.

When Avery was four years old he suffered a stroke as a result of an undiagnosed rare genetic disorder known as hereditary hemorrhagic telangiectasia (HHT) which is characterized by abnormal blood vessels throughout the body. Avery spent eight days in critical care experiencing seizures. His entire right side was paralyzed, he drooled profusely, and could not speak correctly. The doctors told Avery’s parents their little boy would not recover for months, maybe even years. Jessica and Wayne were devastated and cried and felt sorry for themselves for days; however, they knew that they had to push Avery to fight. Ten days after Avery’s stroke he defied the odds and walked into school.

2016 Speak Now For Kids Family Advocacy Day Hero: Gabe


One day Gabe was perfectly healthy, and the next he was lying in a hospital bed in terrible pain. Gabe was suffering from a serious infection that developed after his appendix ruptured. What Gabe’s parents thought was the stomach bug, turned into a diagnosis far more scary and complex than they could have imagined. Gabe’s ruptured appendix triggered a multitude of health complications, including digestive paralysis and formation of a large abscess. 

2016 Speak Now For Kids Family Advocacy Day Hero: Grant

rsz_nationwide_childrens_hospital_reed_grant_photo.jpgWhen he was 11-years-old, Grant was diagnosed with medulloblastoma, the most common pediatric type of malignant brain cancer. The medical team at Nationwide Children’s Hospital immediately acted upon Grant’s diagnosis by performing a craniotomy on Grant’s brain tumor just days after they saw Grant for the first time. Unfortunately, Grant developed posterior fossa syndrome following surgery, which left him with severe left-sided weakness as well as the inability to eat, drink and speak. After spending many weeks at the inpatient rehabilitation clinic at Nationwide Children’s, Grant miraculously overcame the detrimental side effects of his brain surgery; he recovered his walking, eating, drinking and talking abilities. Once Grant returned home, he began living a “normal” life and received mostly routine follow-up care. Therefore, Grant and his family were extremely shocked in December 2014 to find out that Grant’s cancer had relapsed. Shortly after receiving the diagnosis, Grant underwent another extensive brain surgery, which was followed by many rounds of chemotherapy and radiation therapy.

2016 Speak Now For Kids Family Advocacy Day Hero: Kailyn


When she was just 14-months-old, Kailyn was diagnosed with intractable epilepsy. Many doctors were convinced that the treatment for Kailyn’s condition was to merely adjust her medications, the varieties as well as the amounts. As time went on, Kailyn was placed on more and more medications; at one point in time she was taking 19 pills per day. Kailyn’s seizures began lasting longer durations and occurring more frequently than ever before, indicating that this treatment approach was not working.

2016 Speak Now For Kids Family Advocacy Day Hero: Clare


Three days after birth, Clare began to acquire a flurry of health complications upon returning home from the hospital. From feeding tubes to ventilators, Clare was getting progressively worse. Finally when Clare was 4-months-old, she was diagnosed with nemaline myopathy, a form of muscular dystrophy that primarily affects face, neck, chest and limb muscles. Clare would not have survived long without the exceptional care she received at Cleveland Clinic Children’s. To date, Clare has had three major operations during which nine different procedures were performed. Clare counts eight different specialists as a part of her care team. 

2016 Speak Now For Kids Family Advocacy Day Hero: Christian

rsz_childrens_specialized_hospital_panarese_christian_photo.jpgWhen he was 10-months-old, Christian was diagnosed with cerebral palsy, hydrocephly and quadriplegia. Before receiving this diagnosis, Christian’s family remembers reviewing the MRI scan of Christian’s brain alongside his doctor at Children’s Specialized Hospital; Christian was missing half of his brain. At first, Christian was unable to walk, speak and eat on his own. He also had several sensory issues which made it difficult for his family to care for him at home.

2016 Speak Now For Kids Family Advocacy Day Hero: Emery

Emery’s parents could not imagine the challenges for their sweet baby who was diagnosed with Down syndrome at birth. Now 7-years-old, Emery has made numerous visits and endured many procedures at Children’s Hospital & Medical Center in Omaha. She has had multiple procedures for her ears, two major heart surgeries, and most recently a spinal cord operation. Although she has made extraordinary gains and improvements in some areas, Emery’s condition is a lifelong journey. She will require the care of specialists at Omaha Children’s for many more years to come.

Even after many pokes and pricks, Emery never forgets to thank her doctors and nurses, often muttering “thank you for making me better.” Her vivacious attitude provides countless smiles and constant laughs, even during doctor’s appointments and hospital stays. Emery’s presence is most definitely felt when she spends time at Omaha Children’s; her joy fills every room she enters and she intuitively knows exactly when someone needs a hug!

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