Pages tagged "Family Advocacy Day"


What's Up Wednesday -- Khalil

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 22-year-old Khalil. You may remember Khalil from his participation in this year’s Speak Now for Kids Family Advocacy Day.

So Khalil......what’s up?


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

Tom represented Franciscan Children’s Hospital at last week’s Speak Now for Kids Family Advocacy Day event in Washington, D.C.


Born four months premature, weighing 1 pound 5 ounces with a height of 11 inches, Tom immediately faced tough odds. His organs weren’t fully developed, he could not breathe on his own and his retinas were not fused leaving him legally blind. Tom underwent many surgeries and spent a total of 119 days in the NICU before he was healthy enough to go home to his family with the ability to breathe on his own and without the need for any medication.

“The doctors thought I was going to die… but I didn’t… I am a fighter,” proclaims Tom.


Brain injury patient went to Capitol Hill to urge Congress to safeguard Medicaid

North Brunswick resident Khalil Pereira, 22, was in a car accident while driving home from college and suffered a severe traumatic brain injury. He was 18 years old at the time and in his first year of college.

He spent weeks in intensive care and another six months at Children’s Specialized Hospital’s acute inpatient rehabilitation facility in New Brunswick, learning to walk, talk, eat, breathe on his own, and regain control of his body. He relied on Medicaid to cover cranioplasty surgery, neurosurgeon visits, outpatient therapies, transportation and other care vital to his recovery.


St. Joseph's Children's Hospital Patient Spends Time on Capitol Hill to Urge Congress to Safeguard Medicaid for Kids

TAMPA, Fla.July 15, 2017 /PRNewswire-USNewswire/ -- This week, 12-year-old Natalia Ricabal joined nearly 50 other pediatric patients from across the United States on Capitol Hill to urge their members of Congress to protect, not cut, children's Medicaid funding as proposed in recently introduced federal bills, the American Health Care Act of 2017 and the Better Care Reconciliation Act of 2017.

Natalia was diagnosed with Ewing's sarcoma, a rare form of bone cancer, in August 2013. Her treatment required multiple surgeries, including a limb salvage procedure in which her femur was replaced with a cadaver bone, a year of aggressive chemotherapy, a month of daily radiation treatment, and substantial physical therapy.

Her family traveled to Washington D.C. as part of the Children's Hospital Association's annual Family Advocacy Day. The July 11-14 trip included one-on-one meetings with U.S. Representatives Gus BilirakisVern BuchananKathy CastorCharlie CristDennis RossDarren Soto and Senator Bill Nelson; a tour of Washington D.C.; and a celebratory dinner to honor the children and their families.


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

Zoey Nidhi was born in Mumbai, India, with achondroplasia — a form of skeletal dysplasia. Zoey receives much of her care at two hospitals; locally, she goes to Texas Children’s Hospital in Houston, and for care related to achondroplasia, Zoey travels with her family to A.I. Dupont / Nemours in Wilmington, Delaware.


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

Lela was just 6-weeks old when her mother noticed Lela’s eye didn’t look right when at a certain moment a ray of light caught Lela’s eye. They were immediately referred to St. Jude Research Hospital where she was diagnosed with an advanced case of the eye cancer retinoblastoma. Lela was 8-weeks old when her left eye was removed and she was treated for two tumors in her right eye. Before Lela was diagnosed, her parents thought of cancer as an “older person's disease.”


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

Natalia was having intermittent leg pain for several weeks. According to her mother, Natalia’s older brother had been having nightly growing pains, but hers seemed to be different somehow. After a night of extreme pain and her pediatrician subsequently noticing raised bumps on her leg, 10-year-old Natalia underwent an MRI and was diagnosed with Ewing’s sarcoma — a rare form of bone cancer. Suddenly, her focus in life turned from the normal jitters of starting a new school to wondering if she would ever walk again.


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

Kyle was 5-months-old when his grandfather noticed that he was following people with his eyes, but not turning his head. He was subsequently diagnosed with spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Over the next several years, Kyle was in and out of acute care facilities, with pulmonary and other medical issues.


Meet Olivia: 2017 Speak Now for Kids Family Advocacy Hero

At two months old, Olivia began experiencing seizures. That day, the family sought emergency medical attention from a neurologist at the Children’s Hospital of Chicago. The results of an MRI, eye exam, and other testing confirmed that Olivia had Aicardi Syndrome, a rare condition caused by a genetic mutation that limits physical and cognitive development. Girls with her diagnosis have an average life expectancy of eight years.

Despite the “shock and heartbreak” of learning that her daughter’s illness was not curable, Olivia’s mother has “always been impressed and thankful that the children's hospital diagnosed her rare syndrome in less than 24 hours. There was a relief in knowing what we were dealing with.”


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

Max is a spirited young man who loves to act, golf, play baseball, and pal around with his brother, Els. He was born with tetralogy of fallot (TOF), a congenital heart defect that causes oxygen-poor blood to flow out of the heart and into the rest of the body. To help combat this, Max has a pacemaker and an artificial pulmonary valve. In January of 2017, he endured a month-long hospital stay to fight off endocarditis, which is life threatening blood infection. Thanks to the great team at Children’s Hospital Los Angeles, Max leads a full and vibrant life!


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