living with rare disease

‘I won’t let you die, Gunnar.’ I was heading towards end-stage illness, and an end to my fight.’: Son of quarterback, Boomer Esiason, advocates for others with cystic fibrosis, ‘I now live the miracle’

“I was 22 years old and feeling lonelier by the day, as my disease progressed faster than I could have imagined. One day in particular, I broke. I cried and cried. My mom saw it happening through the kitchen window and rushed to me in the driveway. She hugged me. I still think about that hug.”

‘Is she breathing right now?’ She was limp, almost lifeless. I watched in fear as they loaded my tiny 1-month old baby girl into the ambulance.’: Baby is born with rare chromosomal deletion, ‘We basically won the lottery with her.’

“Hattie had been born with a significant deletion of her first chromosome. We had no idea what this all meant. Hattie was one in a billion. We received a plethora of mail. ‘Dear parent or guardian of a child with special needs.’ Special needs? Hattie doesn’t have special needs, does she? As far as we knew, Hattie seemed completely normal to us! We have learned to avoid the CAN’Ts and focus on all the CANs.”

‘A month before my wedding, I woke up unable to see 2 feet in front of me. I chalked it up to a fluke. I was so naive.’: Woman shares emotional battle with Uveitus, ‘I’ll do whatever it takes to persevere’

“I woke up with blood-shot eyes. Everything was a blur. ‘This is going to go away. It can’t get worse.’ This is when my eyesight started to deteriorate. Here I was, 26 years old, a month before my dream wedding day. I had the most beautiful wedding dress, and desperately wanted to look good in my wedding photos. ‘How could this be happening to me?’ I was so angry at the world.”

 Share  Tweet