Today is rare disease day, so I would like to share with you the story of a little girl with a rare disease that changed my life for the better.
My niece, Talia is a bright, sweet, smart and funny young girl. She’s a year older than my daughter, but looks like she’s about three years younger. Her rare disease: Mitochondrial Disease. Mitochondria are like the battery power houses of a cell. When the mitochondria don’t work as they are supposed to, it affects the cells of the body and different organ systems.
When Talia was born, I was absolutely in love. I didn’t have my own children at the time, so she was really my first experience with handling a newborn baby. She was tiny and frail but always looked at you with such loving eyes. I had no idea about the world of rare diseases or of life with a child with special needs. It was all so new and frightening and at times overwhelming. I watched from the sidelines as my sister-in-law and her husband struggled through the emotions of extreme helplessness, coupled with the intense passion to find answers.
Just by chance, my older sister gifted me a old book that was given to her by our late father when she had her first child in 1997. It was called Yoga for the Special Child. I never glanced at it when I received it, I simply put it on my bookshelf and assumed it would be of use for when I baby.
That book became a bible to me. When I looked at it and realised what it was, I saw the potential of yoga for children with special needs. I tried a couple of things on Talia, but to be honest, I was frightened to practice techniques that I had no training in.
Shortly after, I had my first child and moved to Hong Kong. I couldn’t get Talia off my mind. This little girl did something to me… she changed me. Not sure how, but my heart was always with her, praying for her to thrive, feeling so much love for her. I decided to embark on a journey of deep study and training to work with children of all ages and abilities.
This little girl fights everyday. Just by being born, she effected a shift in my life so significant, it has evolved into me setting up the YAMA Foundation (now 2 years old).
So I dedicate my work to you little Talia and all the children and families with rare diseases and special needs! Thank you for coming into my life and inspiring me to work the way I do. Because of you, I've met so many more incredible children, teens, young adults and their families.
To show your support for rare diseases, I encourage you to take part in the interactive #ShowYourRare social media campaign by painting your face and sharing your selfie on social media to show your support for the rare disease community!
I pray that all children find cures or treatments for their suffering!