May 1, 2015
Posted at May 5, 2015 06:09 pm by Jennifer Huron
“The good thing about being diagnosed with Neurofibromatosis is that I can help other people with it,” says Bailey Gribben.
Bailey and his mom remember the days before his diagnosis: one day on the phone, he casually said he needed put the receiver to his good ear. This prompted a visit to the doctor, and it was then that they… Read More
April 28, 2015
Posted at April 4, 2015 06:04 pm by Jennifer Huron
“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.”
These are the courageous words of Tony Ferrandino, who lost his son, Drew, to Batten Disease in September 2014. He and his wife, Katie, and their sons, Gavin and Drew, had lived a relatively normal… Read More
April 27, 2015
Posted at April 4, 2015 06:01 pm by Jennifer Huron
Laura Crandall was suddenly and unexpectedly confronted with the death of her healthy toddler after a nap. She has bravely turned her loss into the greatest gain for this rare disorder, which before she emerged on the scene did not have a name.
Laura is at the forefront of advancing awareness and understanding of Sudden Unexplained Death in Childhood (SUDC)…. Read More
April 27, 2015
Posted at April 4, 2015 05:55 pm by Jennifer Huron
At just 13 years old, Emily Argersinger decided to climb the highest peak in the northeast, Mount Washington. She did this to raise awareness of Sturge-Weber Syndrome – for herself, and for every other patient with this rare disease.
Mt. Washington is famous for its dangerously erratic weather. Emily had never been on a major hike. However, once she came… Read More
April 26, 2015
Posted at April 4, 2015 05:49 pm by Jennifer Huron
Devin Alvarez is a remarkable 18-year-old who has undergone 44 surgeries related to Sprengel Deformity, a rare disease in which the shoulder blade is displaced upward, causing skeletal and muscular deformities and medical complications.
“My back is full of scars because of all my surgeries. When I look at myself in… Read More