Good Weekend had an assignment for me a few weeks ago to cover a story about several families with children who are critically ill and have terminal illnesses. In two cases the children were born with a devastating disease that made it unable for them to develop mentally and physically as a normal child would. In the case of the third child, Kirrilee had led an active, vibrant childhood and then when she was 12 suddenly suffered a mysterious brain illness that left her profoundly impaired and gravely ill for the last 6 years. Her illness requires 24 hours of constant observation and care, most of which is provided by her mother. Update: a few months after writing this article Kirrilee sadly passed away.

Often when I’m asked to shoot something for an assignment it doesn’t occur to me how odd it is that I’m a total stranger that people let into their homes. I chat for a while, maybe set up some lights, take some pictures and then leave. It’s rare that I get to read a story before I have to shoot for it so I often walk into a shoot situation not really knowing exactly what it is I’m covering. Usually the people I’m taking pictures of aren’t familiar with shoots so they don’t have a lot of time set aside for me to take pictures and it’s pretty hard for me to impose more than an hour or two of shooting so I often have to work fast and thoroughly while trying to keep the subject relaxed.

In each case when I met the families for this shoot I knocked on the door with a sense of apprehension about what I was walking into. How sick would the child be? What would the families be like? Would they be sad? Angry? Would I have to tiptoe around certain subjects? Do they really even want me to take pictures?

As I walked through the front door I was thoroughly surprised at how welcoming and loving each family was and I immediately felt a warmth that I don’t often get right away when walking into a stranger’s home. I heard stories about 24 hour care, constant trips to hospitals, emotional turmoil, exhaustion and alienation but I also witnessed deep love, acceptance and thriving senses of humor. I was surprised at how often the parents and siblings of these sick children were saying things that had me cracking up.  They seemed glad to have me come take pictures so that other people could learn about their stories. I felt lucky to get to meet these families and I really wanted to hang out all day with them. I’ve posted a video of a Kirrilee’s brothers performing a dance routine that they do to keep the family entertained.

At the end I felt like it was a tough story to shoot because my wife and I had just given birth to a daughter a few weeks before and we had been going through all of the ups and downs of new parenthood. We were dealing with the massive adjustment in sleep loss and lifestyle change and that feeling that we had no idea what were doing. I know that both my wife and I would look at our little girl and feel an enormous sense of love, responsibility and hope for the kind of parents we would be and the type of person our child would become. Seeing these sick children made me think about how families adapt when plans suddenly change and how they deal with the bumps and bruises of a life they didn’t expect.

All of these families have needed the professional and medical support of Bear Cottage, an institution in Manly, NSW Australia dedicated to serving children and families of children with life limiting illnesses.  Donations to Bear Cottage can be made here: https://support.bandagedbear.org.au/donation-bear-cottage

For more information about Bear Cottage, please go here: http://www.bearcottage.chw.edu.au/

UPDATE 21/05/2014: Several news outlets who have picked up this story have erroneously stated that Kirrilee was dying or on her deathbed when this image was taken and this is not true. She was at home and healthy at the time of the photoshoot. It is true that a few months after I shot this image Kirrilee passed away at Bear Cottage.