March 13 2012

Rett NZ Chair Letter March 2012

Dear Parents and Friends,
I came across an article by David Cameron in the Independent newspaper.
I related to it so strongly that I sent the article to Prime Minister Key as it was just as I felt about having a child with many challenges.
He said "Go with your instincts." So many people have different ideas for your child however as the parent we know and understand our children
David said how important it was to have early intervention for the children.
He said after the shock, pain and confusion of the diagnosis one goes through the pain of dealing with the bureaucracy. So many of the same questions and endless forms to fill in.
Then there is the battle for education, the type of school you feel is right for your child. It is a basic human right -the right to an education.
Respite care is something we all need although we feel we are super human it takes a toll on our family life and is essential for the caregivers.
Lastly he said parents of children with difficulties are the great unsung heros of our day and imagine if they had to be paid for all the hours of work they put in to ensuring their children are well cared for and happy.
I am sure you will all agree with these points that David Cameron raises. They are from a voice of experience.
The Trust is busy organising the Conference. Because most families live in the upper North Island we have gone back to the NOVATEL ELLERSLIE. They have given us a good deal and we look forward to seeing you all there.
IHC Foundation has generously given us a grant of $10000 to bring Susan Norwell to NZ as so many of you have hoped to hear her again after learning so much from her in 2010. Dugald had been busy liaising with Susan. There will be webinaires she will conduct you can watch on the net so you have some information to think about before the conference. The Deane Endowment Trust has given a grant of $10000 to help with the accommodation for parents at the conference.
We are thrilled that Megan and Rob Pakes have a new baby boy a brother for Alysha and Luca.
We have three new families whom we welcome into our Rett family and will coming to the conference. Darren and Heidi are from Whakatane and Aria is 2 years. Little Matilde de Joux lives in Christchurch and is 3 years old and Cherelle is 3 years old and lives with her parents in South Auckland. Tania has been to visit Cherelle who found it great to have another Mum who understood. Looking forward to seeing you in May.

With kind regards, MARK CAMPBELL