Our New Family

The Pakes Family from Tauranga are the newest family to contact the Rett Syndrome Association in New Zealand. Alysha has had a difficult summer with suffering from seizures. Alysha is seen here with her cousin who is very fond of her. Rob and Megan have been fundraising to go to the Rett Parent conference in San Francisco where they will take notes and report back to us on the latest developments in research and ideas to make improve the quality of the daily life of our daughters.

Rob & Megan have found Kathy Hunter’s book very helpful and would like to remind others it is in the IHC library if one wishes to borrow it. We would all love Kathy to visit us again. Last time it was special having her practical hints and warm personality to give us ideas and reassurance with where we were going with our girls.

Rob is an activist and has been approaching different organizations with ideas about Rett get togethers and bulletin boards where we could share ideas using a password to protect our privacy.

There is nothing quite like the advice from others who know and have experienced what we are experiencing. I often imagine what our daughters would be posting on such a bulletin board as I think they have quite a sense of humour.

I saw an interesting programme on President Franklin Roosevelt’s recovery from polio. It was a difficult time for him and as he came to grips with the reality it changed his attitude to life, something which we have all discovered on this journey. I found it interesting that one of his friends said to him “Even though you are in a hole I am not going down there with you.” Excellent advice but rather hard to give to someone.

Rob has been in contact with TV3 and has persuaded Paula Penfold of 60 Minutes fame to produce a programme which would include an update on the research being carried out by Dr Michael Sullivan and his colleagues at Otago and Canterbury Universities.

Watch the website for dates and times as we get closer to the date the programme will be shown. Thank you Rob and Megan for this initiative when you have had such a busy summer settling the seizure pattern.