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
TQ BC for inviting me to speak and share my story with you this morning. So, I’m Nikki, and I’m 30 now. When I was a baby, I was diagnosed with a really rare condition called Alagille Syndrome. For me, Alagille Syndrome affects my liver,
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
Because I was a Make-A-Wish recipient, I wanted to try and raise money for Make-A-Wish. I say “try” because 1) I’ve never done this before 2) I wasn’t sure how this would go or if anyone would donate ro my cause and 3) I thought
Pray “Are any of you sick? You should call for the elders of the church to come and pray over yoou, anointing you with oil in the name of the Lord.” James 5:14 (NLT) This post is not particularly in order, but the best and
Read more ALAGILLE SYNDROME HAS TAUGHT ME HOW ONE SHOULD CARE FOR A P.A.T.I.E.N.T.
When living with Alagille Syndrome, or any other chronic illness or disability, we often focus on the physical treatments such as medications, surgeries, therapies, etc, and these are important. But there’s another kind of treatment that can bring deep healing to our hearts and minds:
Alagille Syndrome & Other Chronic Illness Living with Alagille Syndrome means living with a condition that affects multiple organs and systems in the body. For me, it’s the liver, heart, bones, eyes, ears, and more. I had a liver transplant at age 13, and I
Read more ALAGILLE SYNDROME TREATMENT: THE SPIRITUAL KIND FOR SPIRITUAL & MENTAL HEALTH
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