Family Advisory Committee

 

Family Advisory Committee

Since its inception in 2003, the goal of Rainbow Place has been to provide the best possible support to the children and families who are in our care.

The demands on our services have changed significantly since then and to ensure we continue to deliver on this goal, we have identified the need to listen to our parents’ voices as they share their unique experiences and knowledge of caring for a child with special needs. We believe the sharing of this information will help guide our Rainbow Place service into the future.

We’ve looked at options for how we could best capture this information and in late 2019, established a Family Advisory Committee to provide Rainbow Place with this support. The committee is made up of parents who have had a personal experience with Rainbow Place and the group comes together every second month to listen to the challenges the service faces and share their ideas and expertise.

Below you can read all about our Family Advisory Committee members

Irene Wiltshire (Chair)


The mother of three amazing children, I never imagined needing a place like Rainbow Place.

But when my son Jack, who had cerebral palsy, became really unwell and needed palliative care, we found ourselves in a tough place as a family. We had lost my Mum to cancer only 18 months before, and we were fearful going through it all again so soon.
The Rainbow Place team supported us through Jack’s illness and passing in such an amazing way. They did everything possible to help us and while losing a child will always be difficult, it’s a comfort to know you’re not alone. So when the opportunity to be part of the Family Advisory Committee came up, it was an easy yes.

I wanted in some way to pay back for the support we have received but also use the experiences with my mum and son to help Rainbow Place make things better for the next families.

Emma Pickering


My husband Greg and I have two beautiful children, Walter and Olive. Walter is our connection to Rainbow Place. Walter became sick as a baby and over a very scary two week period at ten months old, he severely regressed developmentally. Genetic testing over the following months revealed him to have Aicardi Goutieres Syndrome. This is a very rare and progressive white matter brain disease (Leukodystrophy). When it was clear Walter wasn’t going to get better, we moved back to the Waikato from Auckland to be closer to family.

In moving to the Waikato, we were fortunate to be referred to Rainbow Place and received much appreciated support from the Rainbow Place team through the next six months of disease progression. Walter passed away at Rainbow Place a few months before his second birthday at the end of 2018.

Both my husband and I, as well as our wider family, are so grateful for Rainbow Place which made being a part of the Family Advisory Committee an easy decision. I see it as an opportunity to use our experiences to hopefully help better the experiences of other families who find themselves on what is ultimately an awful journey.

Louise Henwood


I am Mum to two boys - Damian is 15 and Cameron is 12.

Cameron is our Rainbow. He lives with Cerebral Palsy, epilepsy and autism.

We were offered support from Rainbow Place when it became apparent that Cameron and I were needing more support as his needs increased. A regular respite facility wasn't set up to cater to his needs.

Rainbow Place has been with us through thick and thin and I'd always said that I would love to give back in some way. So when they floated the idea of the Family Advisory Committee, I jumped at the chance to put my name forward. I hope I can do a good job of being a voice for parents now and into the future.


Richard Clay


Hi there, I am the Dad representative on the Family Advisory Committee.

My five year old son, Hadleigh is our connection to Rainbow Place, and together my wife Laura and I have been involved with Rainbow Place for approximately two years.

We have found Rainbow Place a nice welcoming place for families with children who live in a world of uncertainty and are ‘different to the norm’. One of the big positives for us has been connecting with other families who ‘get it’ and understand our different ways of life.

This has then led onto us being able to help other families through tough times and offering advice through our own experiences both positive and negative.

Over the past couple of years Hadleigh’s needs have increased and often we are battling ‘the system’. This is something that frustrates me and my hope is through the Family Advisory Committee we can work together with Rainbow Place and the DHB to enhance the way families and medical professionals communicate and work to ensure the best outcome for both the child and family.

Hannah Print


‘My husband, Deryk and I have three wonderful boys, Pearce, 9, Talyn , 8, and Harvey, 3.

Our Talyn was born with a number of health difficulties which only grew with complexity as time went on. With no diagnosis found, it was difficult to know how to help him and what to expect in the days ahead. As his needs increased, help through Rainbow Place was offered. Their assistance and professional care became a lifesaver for our family.

In 2018, Talyn was diagnosed with a rare genetic condition called KAT6A Syndrome. As it is a newly discovered condition, there is so much still to learn about it. It is known as a neurodevelopmental disorder which affects the brain, central nervous system, and a number of other systems of the body.

The future is still unclear for Talyn, but with the help of Rainbow Place, life has become easier to manage.
Healthcare has always been a part of my life. When the opportunity of giving back to this amazing organisation came up, I was very keen to help out where I could.

It’s been great meeting other Rainbow families and sharing in their journeys. We’re hopeful our experiences will be of help to others needing this service.