My youngest daughter, Anaya, was born August 26, 2009. She was perfect, normal and extremely beautiful. She delighted us with her presence and we reveled in our new baby. A few months later, she became very ill, and we rushed her to the Emergency at the hospital.
After weeks of testing, we found out that she had a terminal brain disease called Krabbe disease, a type of leukodystrophy. Also known as globoid cell leukodystrophy, Krabbe disease causes the nerve cells in the brain and the central nervous system to demyelinate. Babies with this condition have a life expectancy of 13 months.
For two years, I stayed home with her, caring for her as she slowly lost all of her skills. She lost her ability to eat by mouth, to smile and laugh, to move her body and see.
Fortunately, my previous life experiences made me strong and resilient. My life had taught me that I am competent, capable and resourceful. Instead of buckling under the grief and fear of losing my baby, I opened up. I sought out the calm within the storm and was able to make her life as comfortable and beautiful as it could be under the circumstances.
Her favorite things in life were simple. The sound of the birds signing, the feeling of the sun on her face, floating in the bath tub, listening to us reading her stories, and going for walks in the fresh mountain air of British Columbia.
Because she liked books so much, I started an initiative called, “The Library of Hope.” People from all over the world would send us their favorite children’s books to read to Anaya. After reading them to her, we donated more than 200 books to the city of Nelson’s public library. We put a special sticker in each one that talked about Krabbe disease and Anaya.
To keep my friends and family up to date on what was going on with us, I started a blog. I wrote in it several times a week. Writing has always been one of my skills, and inside of two years, I had thousands of people from all over the world reading it. They formed the majority of our support network.
Our local community and family also helped. In order to stay home with her, provide her with alternative treatments and still manage our family expenses, we needed to fundraise. Our community was very generous and helpful, providing not only money but also bringing our family meals when we were in the hospital for weeks at a time.
It was hell, but it was a beautiful hell and I wouldn’t trade the experience for anything. Anaya helped me to learn about what truly matters in the world. She helped me understand life, suffering and death. Most of all, she taught me about love, courage and influence.
Who would have thought that a little girl who never said a single word to anyone would influence thousands of people in her lifetime?
On November 13, 2011 Anaya’s lungs collapsed, and she passed away in my arms at the British Columbia’s Children’s Hospital. It was cloudy all day, except for when she died: that’s when the sun came out with an incredible vibrancy. My angel took wing, and the heavens opened for her in delight.
The terrible shame about the whole thing is that this disease is treatable—but only if it is tested for at birth, before symptoms begin.
In all of North America, only New York, Missouri and New Mexico look for it in their standard newborn screening. Hundreds of children born every year are sentenced to death because they are not tested for Krabbe and other leukodystrophies.
I am going to change that. We have started a non-profit society called Anaya’s Angels.
Its purpose is three fold:
1. Provide resources to families that have babies with the disease, including education, medical supplies, financial help and emotional support
2. Advocate/lobby for Krabbe and other leukodystrophies to be included in the standard newborn screening test
3. Educate people
In the past six months, I have personally gone to educate the parents of children with this disease to make their lives better. I’ve been to the USA, Italy, Northern Mexico and Southern Mexico. I am currently writing a book called “Krabbe Leukodystrophy—A Guide for Parents and Caregivers” that will be published by Anaya’s Angels.
You can learn more about the children we are helping – and how you can get involved by visiting our website.
Camara Cassin is the Head Coach and Community Manager at FundRazr as well as the Executive Director of Anaya’s Angels.
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