Kelsey shares what your support makes possible
When everything felt uncertain, Ronald McDonald House NZ gave us somewhere to be together.
We are both from Northland and have always considered it home. We briefly moved away to seek further medical opinions and support for our son Harrison, but over the last year we’ve returned home. Having our family around us and being able to raise our children here means so much to us.
I’m Harrison’s full-time carer and a stay-at-home mum to all four of our children. I haven’t been able to return to work since Harrison was born, as his appointments, therapies and care needs, along with being there for his siblings, make it impossible to balance with employment. Quentin works locally as a distribution team leader.
Our girls are amazing big sisters and completely obsessed with their brothers. They love the beach, riding their bikes, movie nights and spending time with their cousins. Emmie is our creative, artsy girl, while Ellie is our little spider monkey who is always climbing around the playground.
Harrison is non-verbal and non-mobile, but he is such a happy and expressive boy. He communicates so much through his body – smiling, clapping and kicking his legs. He loves anything to do with water and has always loved watching his beloved Ms Rachel.
Harrison’s diagnosis was completely unexpected. We had a normal pregnancy and birth, but Harrison was born very floppy. At just four days old, he was admitted to hospital because he couldn’t feed safely. He had an uncoordinated swallow and no suck reflex, so an NG tube was inserted.
We spent the following weeks doing what felt like every test imaginable, trying to understand what was happening with our newborn baby. It was incredibly scary.
Harrison was later diagnosed with severe centralised hypotonia and global developmental delay. It took around two and a half years to narrow down a genetic cause for his many complexities. His genetic mutation is extremely rare, with fewer than 30 identified people in the world, and we still don’t know what his future will look like.
Harrison doesn’t show the usual signs of hunger, thirst or pain, which can be incredibly difficult as a parent because he can’t simply tell us what he needs. Whether he will one day walk or talk are two of our biggest unknowns.
All we can do is give him every opportunity and as much support as possible. Despite everything, Harrison is such a happy boy. He has taught us to celebrate the smallest things – a smile, a clap, a kick of his legs. Those moments mean everything to us.
Our most recent hospital stay has been by far the most traumatic and difficult experience our family has been through.
Harrison went into respiratory failure twice. The first time, in July, he was airlifted to Starship and admitted to PICU, where he was intubated for 12 days. We were eventually discharged and managed to spend just five days at home before he deteriorated again.
He tested positive for parainfluenza and was airlifted back to Starship, where he spent another four weeks in PICU and was intubated again.
The first time, our two older girls stayed home with their grandparents while we stayed at Ronald McDonald House with their then six-month-old brother. Our family helped with school, ballet and swimming, while we survived on nightly FaceTime calls with the girls.
As the weeks went on, that became incredibly hard for all of us.
When we had to return to Starship, we knew we needed to keep our family together. Knowing Ronald McDonald House had amazing facilities and a school for the girls gave us some reassurance that, although it would still be incredibly difficult, we could all be together.
The House became so much more than somewhere to sleep.
It gave our family somewhere safe to be together and gave the girls some normality during an incredibly frightening time. They made wonderful connections with other children, and the RMH team made them feel so welcomed and comfortable.
Having somewhere like Ronald McDonald House available to us was an incredible relief. We never had to worry about accommodation. The Starship PICU team contacted Ronald McDonald House and within an hour we had a room confirmed for as long as we needed it.
Without Ronald McDonald House, I honestly don’t know how we would have managed, financially or otherwise. Life doesn’t stop when your child is critically ill – the bills still arrive and everyday expenses continue.
Knowing we had somewhere to stay meant we could focus on Harrison and getting through each day.
We will be forever grateful for the comfort, security and certainty Ronald McDonald House provided our family during one of the most stressful periods of our lives.
More than somewhere to stay
To the people who support Ronald McDonald House NZ, I would want you to know that your donations make a very real difference to families like ours.
You aren’t just providing accommodation. You’re giving families certainty when almost everything else feels uncertain.
You’re helping keep families together when they need each other most, and allowing parents to focus on their sick child rather than worrying about where they’re going to sleep or how they’re going to afford to stay close.
Our family will be forever grateful for the comfort and security Ronald McDonald House gave us. We will never forget the kindness and support we received.
Looking ahead, more than anything, we just hope for a happy and healthy future for our family.
For Harrison, we hope he continues to make progress and that we can give him every opportunity to reach his potential, whatever that may look like. We hope one day we might see him walk or hear him say a word, but we also know we need to celebrate every little milestone along the way.
For our family, we hope for some normality, more time together at home and lots of simple family moments – days at the beach, watching the kids grow and making happy memories together.
After everything we’ve been through, we don’t take those ordinary moments for granted anymore.