Support for parents with ill children

Northland parents whose children are newly diagnosed with a condition or disability do not have to travel the path alone thanks to Parent to Parent.

The Northland branch, based in Kamo, Whangarei, is celebrating 21 years in the community as part of the national Parent to Parent awareness week this week.

Parent to Parent Northland regional co-ordinator Carole Powell says many Northland parents have utilised the organisation, which provides information and a support network. "The heart of the organisation is connecting parents to other parents who have a child with a disability or health condition."

Not only does the association connect parents, but also offers personalised information packs, individually researched and put together and free from complicated medical jargon.

"It's information without spending hours and hours on Google," Ms Powell said.

She says the scope of the organisation includes helping parents of those children with what could be perceived as relatively common conditions such as asthma or ezcema. "You still have a child with special needs."

Then there's the other end of the spectrum, which includes what Ms Powell calls "the rare gems of Northland" - those with extremely rare disabilities or conditions.

"We seems to have a lot of children with very rare conditions in Northland - some are the only ones in New Zealand, or even the only ones in Australasia," she said.

Two examples of these "rare gems" include one Northland child with CDKL-5, the second child in New Zealand to have this diagnosis, and another Northland child with Niemann Pick disease, a group of inherited severe metabolic disorders.

Ms Powell describes the parents' reaction when they are connected with other parents in similar situation as thinking: "I'm not the only one."

"You can feel so isolated. Friends don't necessarily understand the situation. So finding someone that is walking a similar pathway is great," she said. "There are a lot of parents who just want to be put in touch with parents of children with similar conditions, others may have very specific questions."

Those parents who have questions about rare disorders can use the Parent to Parent network to get in touch with other parents worldwide, Ms Powell said, with a strong relationship particularly with the US Parent to Parent network.

The network was opened in New Zealand 30 years ago, with the Northland branch opening in 1992 in Kaitaia, moving to its Whangarei office five years ago, she said.

To contact Parent to Parent Northland, phone 09 4373337.