Tuesday, January 22, 2013

Creating for Coats

We are often humbled by the world when we least expect it. I was humbled by Coats disease when it rocked our world six months ago. This is a part that I am playing to raise awareness of the disease and to perhaps pave an better informed path for other parents who have their lives turned upside down by Coats disease. To support this project, please visit The Anjali Project.

IntroductionSix months ago, my life as a mother was challenged when my daughter, Anjali, got diagnosed with Coat's disease. Coats disease is a vary rare congenital disease that affects the eye and may result in full or partial blindness in the affected eye. Anjali is currently undergoing multiple invasive therapies for her eye, and the process has been very challenging to all of us.

About the Anjali project
Anjali is a very vivacious and sportive young girl. Besides sports, she loves me to read her stories. Taking inspiration from Rick Riordan who wrote the Percy Jackson series for his son who was affected by ADHD and Dyslexia, I want to write a story for Anjali where a child affected by Coat's disease is more than what she appears to be.

In addition to this, I also want to increase awareness of Coats disease. Much research that is out there focuses on the more prevalent diseases such as cancer, where immense improvement has been made in research and medicine. However, the rarity of the disease means that very few doctors are even aware of the condition and the state of the art treatment is a generic, invasive therapy (consider the equivalent of chemotherapy).

I have followed a little the advances in modern medicine and seeing the lack thereof of funding and studies in Coats disease has prompted me to do something. I am not sure whether I am doing something significant, but not doing something is simply unbearable.

About the book
I have started to write the book, I estimate that it will take about an year to get it finished. I will not divulge much about the story here, except to say that it is a blend of Science and Fantasy. Anjali, like every six year old, loves fantasy, magic and miracles and that is what the book is about. And it is also about a biological condition which developed in a child through no fault of her own and about how this girl lives with this and performs magical and heroic actions inspite, or perhaps because of her disability.

When the book is finished, it will be published as an e-book and a free copy will be given to all who have donated to the project.

Where the money is going
I assume that the cost of ebook publishing is negligible. So yes, all the proceeds from the project will go towards funding research in Coats disease. The chosen recipient for the project is the Jack Mc Govern Coats disease foundation which collects funds to specifically support Coats disease.

And as my own pledge, if the book sells over and above the copies distributed to the donors, I will be donating the profits to the Coats disease foundation as well. So there is really no monetary profit in this for me

In short
In short, I want to do three things with this project
1. Write a story that inspires children affected with Coats' disease
2. Raise awareness of a rare disease through the means of a story
3. Collect funds for an institute that supports research and outreach regarding Coats disease.

I look forward to your support.

1 comment:

  1. Thank you for sharing this wish readers. Wishing you strength and clarity. I'll be following gina/willowday


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