How a rare illness brought our family closer together.

A two-minute phone call in 2015 turned my life upside down and inside out. The call was from my daughter’s doctor, explaining that I needed to take her to the Red Cross Children’s Hospital – as soon as possible.

Suddenly, my wife, Jean, and I became parents of a chronically-ill child. (Of course, we were already parents of a chronically-ill child but up until that call, we didn’t know it.)

Our daughter, Rachel, then six, was diagnosed with an exceedingly rare bone marrow failure condition called Pure Red Cell Aplasia.

She may have been the one who was chronically ill, but the whole family was plunged into a world of pain.

My first reaction was denial, which didn’t last long because there was just so much to do. The years flew by in a whirl of doctor’s appointments, hospital visits, biopsies, blood tests, transfusions, and morbid Google search binges.

The denial may have only paid a brief visit, but the anxiety, anger and fear were annoying guests that overstayed their welcome.

So was the guilt. I blamed myself. We had our house painted just before Rachel was born, so maybe the paint’s toxic fumes had caused her illness? Maybe my DNA carried a mutant gene I’d passed on to her?

Our lives were placed on hold. We couldn’t make plans because the future wasn’t certain.

A paper in Britain’s Journal of the Royal Society of Medicine that looked at the impact on families with a critically-ill member concluded that being a parent of a very sick child sucked. Okay, maybe “sucked” wasn’t the actual term the researchers used.

The paper found that having a sick child had “a strong negative effect on PQL”. PQL is academic-speak for “parental quality of life”.

“Compared to parents of healthy children, parents of children with chronic disease report lower self-development, restrictions on their well-being and emotional stability, and lower levels of daily functioning,” the authors wrote.

A research paper in Acta Oncologica, a Swedish medical journal of oncology, described parents with chronically-ill children as having post-traumatic stress disorder. Which is true, except the trauma isn’t post. It’s ongoing.

The psychological distress felt by family members often results from their feelings of helplessness. There are other PQL downers.

Our social lives are disrupted, our interpersonal relationships are strained, and our financial resources are depleted.

Finances are a burden, not only because of the cost of frequent specialist medical treatment but also because parents have to miss work to care for their children.

The additional emotional burden of a sick child can lead to friction between couples, and often results in the breakdown of relationships. The divorce rate in marriages where a child has a major medical issue is high.

While the research concluded that the parental quality of life suffered, there were positive twists for Jean and me.

Rachel’s illness strengthened our relationship. We knew we had to get through it together. Rachel needed us and Jean and I understood that we couldn’t take care of our daughter if we fell apart so we took care of each other so that we could take care of her.

We took a financial knock (Jean and I both gave up full-time work to look after Rachel), yet we managed. We witnessed humanity at its finest, with friends coming to our assistance and strangers delivering meals.

We joined Rare Diseases SA and were supported by other people battling uncommon medical conditions. Rachel’s doctors at the Red Cross were compassionate and skilled and walked with us on our journey until Rachel had a bone marrow transplant.

The transplant was successful and seven years after that two-minute phone call she is a healthy and vibrant teen.

There are consequences. She lost two years of schooling and our other children were neglected while we focused on her.

Being the parent of a chronically-ill child had “a strong negative effect on PQL”, but it also made me recalibrate my priorities and re-evaluate my purpose in life. I became more focused on what’s really important, and that is valuing our time together as a family.