Nicky attended our Mums & Caregivers retreat in Okoroire Hot Springs last year and says she absolutely loved every minute of it.
“It was the most amazing experience I’ve ever had!” she says. “It was the first time I’ve been able to get away on a weekend that I’d planned since I had my son (see Zachery’s story). Being in an environment with other mums like myself with children of all types of disabilities was incredible.”
Zachery has Cohen Syndrome, a rare genetic disorder that causes developmental delays, intellectual disabilities, microcephaly, and weak muscle tone (hypotonia).
“Less than 1,000 people in the world have Cohen Syndrome and only four people have it in New Zealand,” Nicky explains. “The first night we arrived, at the ‘meet and greet’, I found myself sitting beside a mum who had two boys with it. It’s such a rare genetic disability, there’s not much information out there. So, to meet someone else in the same situation was amazing.”
While having time out was a huge benefit, Nicky says that connecting with other mothers and caregivers was the best part. “It was an opportunity to talk with and support other mums – and know that you’re not the only one dealing with difficulties that are more challenging than most. Just knowing that these Mums have survived, and they have a smile on their faces – that makes a real difference.”
She says the entire weekend was wonderful. “The food, accommodation, … everything at Okoroire Hot Springs was incredible. Best of all, I could rest when I wanted or join in activities like line dancing or making clay pottery. It was so much fun – the most brilliant weekend. I loved every minute of it!”
