Heather Mankala [March 10, 1998, October 1, 2009]

On March the 10th 1998, a little girl named Heather Mankala was born.
Little did I know that our paths would one day cross and that our brief encounter would have such a deep impact on me.

Heather was born in Shawville Quebec, a small town in west Quebec, to parents Barbara and Marc and siblings, Ashley, Steven, Michael  and Danielle.
At three months of age, Heather was diagnosed with Cystic Fibrosis, a fatal genetic disease that affects the lungs and digestive systems.

As you can imagine, it was a very hectic home life, with five children, one of whom was seriously ill. Heather had her first operation at three years of age and would be in and out of hospitals for the rest of her life.

Heather would attend school regularly until grade five at which time she was so ill and her regiment of pill taking, breathing exercises and the risk of infection due to her low immune system, made it impossible to continue on a full time basis. She was tutored in home twice a week when she was not too sick.
Even during all the difficulties of hospital visits and physical therapy, she was a very happy and active little girl. She was often seen riding her all terrain vehicle through puddles and mud for hours on end and did not mind at all getting a little dirty. This was actually very therapeutic for her as the vibrations of the 4 wheeler would help much like her clapping exercises. Clapping is an exercise which involves tapping the chest and back vigorously to help loosen the the mucus that can clog the lungs.

She was also quite aware of her illness and participated in fund raising events to raise money to find a cure for CF. In January of 2005, she was featured in a story of a local newspaper on how she and her school were collecting pop can tabs that were sold to a recycling company and the money raised given to the Canadian Cystic Fibrosis foundation.

And like most kids in this day and age, she was hooked up to the Internet and loved her cell phone which allowed her to keep in touch with her many friends from school. It was not uncommon for Ashley, Heathers eldest sister to receive a call or text message asking to be picked up to go shopping… Heather loved everything Hannah Montana.
Her laptop also allowed her to further keep in touch with her friends and siblings through email and Facebook .

You may be asking yourself at this point, where do I fit in?
Back in August of 2009, I initiated a project in Ottawa called Help-Portrait. The Help-Portrait initiative was conceived by Jeremy Cowart, a well know photographer based out of Nashville Tennessee. The idea was to mobilize photographers throughout the world, and on one day, December 12, 2009, take portraits of people and families, for whatever reason, never had a portrait session done before. It is best explained here:

http://www.youtube.com/user/helpportrait#p/u/38/6Ar8IxUsxR8

After putting out a few invitations in late August, early September, I received a call from our local children’s hospital, asking if I was available for one of their patients. This patient was Heather, and her condition had deteriorated to the point where she did not have much time left.
I, along with fellow photographer Rebekah Yates, spent about one to one and a half hours photographing Heather at Rogers House, a hospice for pediatric palliative care.
Little did I know that two weeks later, Heather would pass away.

On this day, the one year anniversary of Heathers death, I still cannot explain fully the deep impact Heather has had on me. As a photographer, I can say that it was the defining moment whereby my work really meant something. It gave a memento to her grieving parents, brothers and sisters. It connected us, strangers, to one another through a bond I define as spiritual in nature. I wish I was a writer to eloquently express my thoughts and emotions, but I will try to let my camera speak on my behalf.

Shortly after this, I became a volunteer photographer for the Canadian Cystic Fibrosis Foundation’s Ottawa chapter. I get to meet some of the bravest young boys and girls you will ever come across and speak to the many volunteers, administrators and nurses and researchers that are tirelessly working to find a cure for CF.

I would like to thank Ashley Mankala-Proulx, Heather’s sister, for her patience, for talking to me when it was very difficult and for sharing a little part of her baby sister Heather with me. XOXOX. You are always in my thoughts.
My thoughts and prayers also go out Heathers mother Barbara and all Heathers family… especially Steven, Michael and Daniel. May you find comfort in the many fond memories you have of Heather.

Wherever you are Heather, I wish you a pain free, blissful journey and hope to meet up with you on the other side one day. Breathe…

Jean

xoxo

[click here for more photos]

[Photo By Michelle Valberg for CHEO]