Jul 21

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.

Jul 12

Meet William Ri Jin: 2017 Speak Now for Kids Family Advocacy Day Hero

William Ri Jin was born in Hohhot, China, with achondroplasia — a form of skeletal dysplasia. Will receives much of his care at two hospitals; locally, he goes to Texas Children’s Hospital in Houston, and for care related to achondroplasia, Will travels with his family to A.I. Dupont /Nemours in Wilmington, Delaware.

Jul 12

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.

Jul 11

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.”

Jul 11

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.

Jul 11

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.

Jul 10

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.”

Jul 09

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!

Jul 09

Meet Sydney and Kayla: 2017 Speak Now for Kids Family Advocacy Day Heroes

When twins Kayla and Sydney were born, their newborn screening came back with some bad news. Sydney was diagnosed with sickle cell disease and Kayla — the elder sister by one hour and one minute — was found to carry the trait. Sickle cell disease is described as a group of disorders that cause red blood cells to become misshapen and break down. This in turn causes infections, pain and fatigue.

Jul 08

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

Katie is truly a living miracle. At two days old, Katie was diagnosed as brain dead, but she shocked the world when she awoke from her coma three days later.

“When I took her home from the hospital, I was left with the impression that her brain was hurt badly as a result of being without oxygen. She had showed no respiratory effort after being born and the machines kept her breathing,” recalls Katie’s mother, Edwina.

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