ABOUT THE BOOK
Alagille Girl’s back cover blurb:-
When she was only a few weeks old, Nikki was diagnosed with a rare medical condition that affects multiple organs and parts of her body. As she grew, a life lived with multiple medical issues soon forced her into a journey of physical, mental and spiritual challenges.
In her short lifespan, this young girl suffered more than a lifetime of trials and tribulations. From a failing liver, being friendless and feeling lonely at school, broken bones and sensory impairments to suicidal thoughts and surviving a near-death episode, Nikki asked the tough and hard questions – Why me God? Why am I sick when my siblings are perfectly healthy? Why not someone else who is stronger?
The future is full of uncertainty. Fear and worry fill Nikki’s mind. Life as an Alagille Girl is a road rarely travelled. Will her current medical condition get even worse? What will be her next medical diagnosis? What’s the good in all this? She must hold on to her faith to survive.
To read the book, click HERE
For physical copy of the book email nikkihmlee@hotmail.com
ABOUT ALAGILLE SYNDROME
Alagille Syndrome is a rare genetic disorder that primarily and firstly affects the liver function, it can also affect the heart, kidneys, eyes, bones, facial features and more. It is most commonly caused by the mutations of the JAG1 gene, and less often in NOTCH2, which play a role in the Notch signaling pathway, essential for normal tissue development. It is typically autosomal dominant, meaning one copy of the faulty gene from either parent can cause the disorder.
Some key medical features of Alagille Syndrome includes liver problems (bile duct abnormalities), heart defects (pulmonary stenosis), distinctive facial features (broad forehead, deep set eyes, pointy chin), skeletal abnormalities (butterfly-shaped vertebrae), eye abnormalities (posterior embryotoxon), growth delays, possible kidney issues and more.
Alagille Syndrome is a rare condition you’re usually born with, that affects how some parts of your body grow and work, like the liver and heart. It can cause yellowing of the skin , heart murmurs, certain facial features, slow growth and so on.
For more information about Alagille Syndrome, click HERE
ABOUT THE AUTHOR
Hey there, I’m Nikki Lee (Alagille Girl), an Australian-born Malaysian Chinese living in Melbourne, Australia. I’m actually just like any other human being, but because I was born with a rare disorder called Alagille Syndrome, I’ve automatically become a rare patient with an extraordinary life.
I was born, in 1992, with Alagille Syndrome which affects my liver, my heart, my bones, vision, hearing, learning pace and physical development. I had a liver transplant in 2006 at the Royal Children’s Hospital. I have a heart condition called Pulmonary Stenosis. I was born with smaller and weaker bones, and have a butterfly-shaped vertebrae. I have a hearing condition called Keratosis Obturans and a vision condition called Cone Rod Dystrophy. In 2021, I was told that my right eye is legally blind and my left eye will probably progress as well. In 2014, a Neuropsychology report stated that I am 4x slower than my peers when learning and doing tasks.
Because of my many health issues and challenges, Alagille Syndrome also affected me personally. Growing up, I’ve also had to face emotional/mental, social, academic and spiritual struggles. It was all too much. Life was too much. Until one day, I wanted to end it all. In 2014, at 21, I wanted to commit suicide.
Thanks to God, on 19 December 2023, I self-published my book, Alagille Girl, because I wanted to share the story of my life publicly. I wanted to tell as many people as possible about a girl who was born with multitude of challenges and trials and yet can keep her head above the waters with God’s help. It is possible to go through multiple medical, physical and emotional turmoil and yet keep standing tall. You can BE strong even when you’re plagued with many problems. With God, anything is possible.