February 2020
"I met Tonja (she has NBIA PKAN) four years ago when she came with her mother to the swimming therapy-Halliwick. She was very exciting and of course me too.
February 2020
"I was three years old when my sister, Josie, was born. After a year it became clear that she wasn’t reaching milestones that most babies do. Her favorite word was, “eee” which meant anything from she wanted something to a whole story she couldn’t quite communicate. I used to ask, “When will Josie be able to play with me?”
February 2020
"Bhavin (aged 39) was diagnosed with NBIA (PKAN) in 2012. It took us almost two years to give our questions an answer. It was extremely shocking but felt relieved on the other hand because we finally knew what was wrong. Although we felt helpless because there was nothing we could do about it.
February 2020
"Let’s start from the beginning……
Lexi Fae was born on March 8, 2016. She was a healthy beautiful baby with a head full of curls, and no complications. Lexi was very cute and sweet from the moment she was born. Her first few months of life were typical however she was unusually quiet for a newborn.
