A person’s sick body reflects what humanity is like spiritually. In my book, Alagille Girl, I dedicated a chapter listing all my medical conditions – past and present. Today, I want to give an updated and brief list of my chronic illnesses and disabilities. Past
The reality of sight and the reality of blindness. I never thought one could be in two realms when it comes to vision. It’s been almost four years since I was told I’m legally blind. And I’m still trying to figure out how to live
Two weeks ago I went for a liver CT scan. Three days later I went for my liver appt. The days before my scan and appt, I didn’t think too much of everything. One of the reasons why I didn’t think too much of the
Exactly 18 years ago, I had a life-saving liver transplant surgery. This means, O-liver, is of legal age. Yep, Oliver can do whatever Oliver wanna do. Except drink. No red wine. Only Ribena. It’s extraordinary how my life extended for another 18 years and although
Read more WHAT IS THE LIFE EXPECTANCY OF ALAGILLE SYNDROME? I’M 31 & MY LIVER IS 18
It’s Not Just A Story, It’s My heart & Soul Finally, my book, ‘Alagille Girl’ is out and available – thank God! I was born with a rare illness and have faced continuous medical, physical, emotional and spiritual challenges for the past 3 decades of
This year was my first year of being a blind girl and one of the feelings I felt is as if I was thrown into a bullet train. There were no warning signs, I had no choice and it happened so fast. I was born
Alagille Syndrome & Blindness Alagille Syndrome is a rare genetic disorder that affects multiple organ systems, including the liver, heart, bones, eyes and more. For me, it also brought an unexpected challenge: blindness. Understanding Alagille Syndrome Alagille Syndrome is characterised by a reduced number of
Read more WHAT ARE THE SYMPTOMS OF ALAGILLE SYNDROME? HERE’S HOW IT IMPACTED MY VISION