Darcelle is a strong and capable mother of three, living in Weymouth with her husband and kids. She is heavily involved in her community, is a member of the Counties Manukau Health consumer council, a board member of the Wiri Licensing Trust, and works at The Pride Project Charitable Trust in Manurewa.
Darcelle shares the story of her whaanau this International Day of Disabled People:
"My seven-year-old son Israel has Angleman Syndrome. Angelman's syndrome is an incredibly rare condition, and Israel was the first Angel our paediatrician, Dr Tim Hill, diagnosed in his career.
"Israel was not well from day one and was hospitalised at Middlemore a lot in his early years of life. It wasn't until meeting Dr Hill when Israel was six months old that he recognised something more was going on for Israel. Dr Hill tenaciously kept doing tests until we had a diagnosis. It was a stop your life moment and was the beginning of our journey in the health system.
"My son's disability has made me who I am today. All the experiences of my whaanau visits to the hospital have shaped my trust, belief in the system, how I show up, what I hear, and how I interact with all the people our family now have in our lives.
"I believe whakawhanaungatanga (establishing relationships) should be at the core of health care, especially when you are living with a child with a complex long-term disability. I want you all to see the whole person, the whole whaanau, and the entire social setting we are coming to you from because then I'll feel seen, and you will be able to support me to cope with anything that comes our way.
"I often reflect on my experiences, support system, and position to know how this complex system works and where I can get help. It worries me that so many will not have the connections or have the time or brain space to advocate for themselves and their family as I do.
"I have supported a number of Angels and their whaanau early on in their diagnosis and feel privileged to do this. You cannot know that feeling until you walk in our shoes and grieve for all the hopes and dreams you had for your child. People need support and information at all stages of the journey, and consideration must be made to the entire family unit, not just the patient and primary caregiver.
"My number one support is my husband, we are in this life together, and we do it together as a team. The most significant help to keep me and my whaananu healthy is access to home and community supports to keep our relationship strong.
"I am Israel's mum, but I am also a mum to two other children, and my daughter Zavannah sometimes wants me to read her a story, or just have some hug time, and it can be heartbreaking when I can't because I'm with Israel. I want the system to support Israel but also help us to thrive as a family, our voices to be heard, and our ideas considered."