Medical Research

Meet Fernando

Oligohydramnios. It’s an unfamiliar word to most. As a diagnosis to a pregnant mother, it’s terrifying. For Florence, a routine visit to her obstetrician in Guatemala City for an ultrasound at 31 weeks brought a diagnosis that changed everything. It is a condition that affects development of the baby and can cause preterm birth. Florence’s son, Fernando, was born at 32 weeks in April of 2016 in Guatemala. Decisions needed to be made quickly. Fernando was taken by air ambulance to the Neonatal Intensive Care Unit (NICU) at Johns Hopkins All Children’s.

Taylor's Story

Taylor StearnsADPKD, Living with PKD PKD has caused my family so much hardship. Growing up, I watched my mother suffer as her health declined. She was always in so much pain, never wanting to leave the house because she was so uncomfortable. Finally, at age 41 she was put on dialysis, and she was beginning to manage her symptoms better. About a month or so later, a massive aneurysm we didn’t know about ruptured in her brain, and after nine long days in the Neuro ICU, we decided to put her on comfort care, knowing her wishes.

Rylee's Story

Rylee suffers from Pachyonychia Congenita, an ultra-rare skin disease so painful that walking and standing is difficult, and sometimes impossible. Rylee, constantly battles painful calluses and blisters on her feet. Currently, there is no effective treatment other than managing the pain, which Rylee does with the help of crutches, sometimes a wheelchair, and crawling. PC Project is dedicated to serving patients like Rylee.

Experimental OMRF drug shows promise in rare brain cancer

Five years ago, Mike Schuster’s life changed forever.

That’s when the Norman, Oklahoma, resident was diagnosed with glioblastoma, a form of brain cancer and the same disease took the lives of Sen. Edward Kennedy and Sen. John McCain.

As Schuster nears the five-year anniversary of his diagnosis with the deadly cancer, he’s almost tripled the average life expectancy for patients with glioblastoma.

A letter from an AS parent

I remember the day my 14-month-old son Orion was diagnosed with Angelman syndrome – devastating, crushing, hopeless. I heard words that no parent ever imagines hearing about their child.

This is a point/counterpoint one year after diagnosis that I hope will give you hope for a future – not at all as you expected – but richer than you could ever imagine.

“Your son has Angelman syndrome.” I had never heard of that before diagnosis day.