No one imagines a life of suffering for their child.
Jenny Noble, the mother of Waipuna Hospice patient, Hayden, shares her story on finding out her child has a terminal illness before the age of six, and the journey her family has gone through since.
When you find out you’re pregnant, you often envision what your child’s life will be like. You picture their first step, their first Christmas, their wedding, having children, or becoming a sporting athlete. You imagine them experiencing all of life’s joys.
What you do not imagine is a life spent in and out of the hospital, fighting to get care, searching the world for answers to your child’s rare condition.
You do not imagine being told your child has a terminal illness at six years old.
However, life isn’t fair and is often brutal.
My son Hayden was diagnosed with an extremely rare genetic condition called Mucolipidosis III Alpha/Beta, which a lysosomal storage disease. This condition means that Hayden has endured countless surgeries to manage his complex symptoms.
When Hayden was diagnosed there was just a six-line description in a library book that did not really give us any information. We were told, “Go home and get on with your lives as there is nothing we can do. You as parents will suffer more than your child will”. We thought, “What does that mean? What are our lives going to be like? Is our child going to die?” We did not know what to do, and no one could help us.
We spent years fighting to get Hayden the care he needed.
Then one-day Hayden’s doctors told us there was no more medication available to treat his pain and nothing more they could do to help. Hayden was discharged from their care with no answers and no hope.
I ended up going to my GP as I was beside myself, I didn’t know what to do as Hayden was in so much pain and nobody was helping us on the next stage of his journey.
It was then that we were referred to Waipuna Hospice for palliative care. The referral didn’t come as a shock, but as a relief, as almost immediately we started getting the help we needed.
Initially, I did not know what form of palliative care Hayden would receive, but knowing Waipuna Hospice was there was such a relief because I knew I had somewhere to call. I now know I can turn to Waipuna Hospice for help when we need it.
At Waipuna Hospice, Hayden is not just a number in the healthcare system, and we don’t have to fight for the care he needs and deserves anymore.
Hayden is well-supported thanks to the kindness of Waipuna Hospice, and they make him as comfortable as possible.
As soon as we started receiving their care, I felt like I could breathe again.
Thanks to Waipuna Hospice we now have access to occupational therapy, nurses and doctors who come to our home, a chaplain who comes to talk with Hayden and our family, and they even organised a special bed and supported our application for a bidet and toilet for Hayden. We would not be getting any of that support if we were not under Waipuna Hospice’s care. It means the world to our family.
The easiest way to explain what palliative care is for Hayden is by saying that it feels like Waipuna Hospice’s main purpose in this world is to take care of my son and make him as comfortable as possible. Nothing is too hard when it comes to Hayden’s care, and we are no longer on this journey alone.
I always thought I knew what Waipuna Hospice was, but it is so much more than what I could have imagined. Everyone we meet, from the nurses to the support teams, put in 100 percent all the time – you would think they were making a million dollars a year with the support they provide you. I don’t know how they do it. Everyone always goes out of their way to ensure Hayden is comfortable and able to enjoy the moment. They are always just a phone call away, day and night.
Waipuna Hospice has not only helped us to care for Hayden, but they have also ensured our whole family is taken care of.
Please join me and help Waipuna Hospice be there for families like ours by making a donation. With your help, they can continue to care for us, and many others, when we need them the most.
Jenny Noble – Hayden’s loving mother.