2014 Telethon Stories



"Why did it happen to him? Why did it happen to us?" It's not an easy question for any parent to ask. At just one year old, Cayden was diagnosed with a tumor in his brain. Fortunately for him, he was taken to All Children's Hospital Pediatric Neuro-oncology Program - one of just two in Florida. The tumor was removed, but Cayden's problems didn't end there.
Brain cancer is rare in small children, and it is also extremely rough on their tiny bodies. But, with access to vital clinical trial information, All Children's was able to create an effective treatment plan that included a year of chemotherapy. Today, Cayden is 6 years old and, having survived two bouts with cancer, he is still working with All Children's on speech, feeding and occupational and physical therapies.


"God knows my future. And I don't. I'm just trying to make it happen," says 12-year-old Cole. Cole was diagnosed with a brain tumor after experiencing flu-like symptoms that wouldn't go away. He received an MRI at All Children's Hospital, the largest pediatric cancer program in Florida, and soon he was whisked off to surgery.
Because of its location, not all of the tumor could be removed. A treatment plan that includes chemotherapy and radiation was put in place by one of All Children's Hospital's neuro-oncologists. Cole's own healthy stem cells are replanted to minimize the toxic effects of treatment. "Stem Cell Rescue" is an innovative and specialized treatment that isn't available at just any hospital.


When his breathing problems began at just three months, Coltin's parents thought he had asthma. But after treatments didn't work, he was taken to his local ER where an enlarged heart was discovered. Because tiny hearts need specialized care, Coltin was medevaced to All Children's Hospital where he arrived in full congestive heart failure, his organs beginning to shut down.
Fortunately, as one of the leading pediatric cardiology and cardiac surgery programs in the nation, Johns Hopkins All Children's Heart Institute specializes in rare heart defects. Within weeks of his surgery, Coltin was well on his way to recovery.


There are only 140 pediatric neurosurgeons in the country. All Children's Hospital has three. This fact proved critical to little Davien who was snuggled against his mother in his own home when a random, stray bullet pierced a window and then Davien's skull, damaging his eye and a crucial portion of his frontal lobe.
He was immediately flown to All Children's where a neurological team more than familiar with developing brains raced him into surgery. Davien is in recovery but requires ongoing therapy through All Children's.


"It takes a village ... and All Children's is part of our village," Jack's mom says with a grateful smile. Just hours after his birth, Jack's parents were hit with a double whammy: Jack was diagnosed with Down Syndrome and within his first few days, required emergency surgery at the Level III Neonatal Intensive Care Unit for a blockage in his stomach. Jack had a team of primary nurses who immediately bonded with the family to help them through.
Now three years old, and doing much better, Jack still attends weekly therapy at All Children's Child Development and Rehabilitation Center.


"When I learned I needed a new heart, I was kind of upset," Madeline explains. "I loved my old heart!" At just 17, Madeline had been through a lot: heart failure, multiple heart surgeries and even a stroke when she was told it was time for a transplant. For a patient who's had multiple heart surgeries, a transplant is very high risk and not just any hospital is willing - or equipped - to handle it. But Madeline was in good hands. John's Hopkins All Children's Heart Institute has been a leader in heart transplantation for nearly 20 years.

Now, for the first time, Madeline can focus on the things she can do, and not worry about what she can't.

Waylon and Aaliyah

In the world of immunodeficiency diseases there are survivors and there are trailblazers. This is the story of two of them. Waylon and Aaliyah have something in common. They were both born with severe combined immunodeficiency disease (SCID) - it's also known as "Bubble Boy Disease" - which leaves newborns defenseless against common bacteria and viruses. Unless diagnosed early, many succumb to infections before they turn two.
For Waylon, diagnosis was obvious because, sadly, his older brother passed away from SCID. But recently Florida made diagnosis easier by adding SCID to its list of routine newborn screenings. This means that, if identified early, the chance for survival and the cost of treatment greatly improve.
And that's where our trailblazer, Aaliyah, comes in. She was the very first baby to benefit from the early screening program. She received her bone marrow transplant and harvested stem cells from a donor at All Children's - which is known for performing the first stem cell transplant in a SCID patient. Both children are doing well thanks to early diagnosis.


According to his parents, "Xavier is a miracle, an absolute miracle." At just 24 weeks, Xavier made his grand entrance at less than 2 pounds, or the weight of an iPad, putting him on what is referred to as, "the edge of viability." In order to survive, he spent several months in All Children's Hospital's Level III Neonatal Care Unit (NICU.) Luckily for Xavier, offering the most advanced care on the West Coast of Florida, All Children's was the place to be.
Twenty-five weeks for an infant is a 50/50 proposition, but Xavier is a fighter. So is the Neonatal Unit at All Children's Hospital. They were able to get Xavier into a study for Respiratory Distress Syndrome which All Children's Hospital is researching. It helps prevent chronic lung disease in preemies like Xavier. Twenty-four babies from our NICU participated in the study and, while the results are still out, Xavier, at a healthy 26 pounds, has left his preemie days behind him.