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Nicodamus With Coreena

Rett Syndrome & Coreena

Photos - The first three years

  Happiness    is   contagious  . . .  Be a carrier . . .

Our daughter Coreena Chaplin was born in Coraki, NSW Australia, while we were on our third overseas trip in our Schooner 'Coreena'. The boat's name-sake joined the crew at 4 days old. At 11 months she had her big introduction to ocean cruising, crossing the Tasman Sea heading home to New Zealand.

We were aware that Coreena hadn't continued making the usual developments aged about 14 months.
(Though we didn't acknowledge the fact truly until she was over  24 months. She had started regressing - losing skills such as 'talking'  and useful hand movement, but she was luckly to retain her ability to walk, maybe it was because she started very early. By 10.5 months she could cross the cabin floor  between the bunks.

She began attending the Fitzgerald Centre in Auckland in June 1979 and was always just labelled as Intellectually Handicapped.  We continued living on board until Coreena was three and a half years old then at this time her father Ian and I went our separate ways. We had remained friends since meeting in 1971.

Coreena transferred to Somerville School aged 6-7 years, attending there until 16.
I had heard a little about Rett in 1991 but there was very little documentation available. A video tape was made of Coreena in her school environment and sent to America for assessment.
The outcome was that she was classed as "TOO Good" to fit the criteria.

( Must have been starting life 'afloat' )

Schooner "Coreena

Schooner 'Coreena' 38 ft.

* * * * *

In September 1993 we left Auckland and moved to Whangarei.

Coreena attended Blomfield School for four years and was presented her leaving certificate the day after turning 21. The Rett Syndrome diagnosis was made in Nov. 1997, (when Dr Witt Engerstrom visited N Z from Sweden). This was the month before Coreena's 21st birthday. Going from NO diagnosis ... to MAYBE Rett ... to NOT Rett ... to definately Rett Syndrome was an emotional roller-coaster ride.

After a gap of 13 years ... 2 days before my birthday in 1989, my new daughter arrived.

Going off to see big Sisters Concert

Steph at 10 1999

Stephanie is now 12 and has always been my sweetest friend, my shoulder to cry on, my support and much more ... (Sadly her dad Phillip died in 1992. )

After Coreena was diagnosed I searched the web for "Rett" and found the International Rett Syndrome Association .... IRSA ... with amazing coverage of the Syndrome and links to more sites.  I signed on to Club Rett which then had about 100 members.  In this simple act of subscribing, I have something I had hunted, for twenty years, the support and understanding, for the first time in Coreena's life, not just for her having Rett, but support for Stephanie and myself.

An example is when I posted to the club mentioning I'd like to do some thing special for Coreena's Rett sibling's 10th birthday ... and asked if anyone would like to take the time to send a card from so far away... Stephanie received cards AND gifts from all over America and Australia. She couldn't believe her eyes. I thank all my contact's on the Club, and specially the people who have become close friends.

In 1999 and 2000 Coreena did a Life-skills course at Northland Polytecnic. She loved the variety of things that were covered, including gym, cooking and visits to St John Ambulance, Rescue helicopter and Police Station, etc. She is very mobile but only has about 20 words to her speaking. (Mostly single syllable). Coreena can not write but will hold a pen and make scribbles and she will glue pre-cut pictures.   She will also get her self a drink, including taking a cap off a bottle and pouring, or turning a tap on/off. I have to remember not to leave the cookie jar on the bench, she can open that. No bowl of fruit ... if she doesn't empty it, she'll at least take a bite out of every piece of fruit.

We have learnt Coreena responds best to brief 'messages'.

"Car - Coreena "... she'll go out and get in. If one door is locked, after a little hesitation, she will walk around and try the other side. Also " Toilet Coreena - bed " and she will do exactly that. She certainly understands.
Coreena's dad died suddenly on the 16th Nov 1999 and April 2001 Coreena's Rett Syndrome MECP2 gene test results were received from the Western Sydney Genetics Program. Results being ~C808T (Arg270stop) mutation in exon 3.

One of my current projects is writing about our tales from nearly 10 years on the yacht, cruising New Zealand, Australia and the South Pacific. I was the navigator.  I have a link to one chapter on my home page. There are about 15 (chapters) at this stage. I dabble on the computer in the advertising scene, mainly for Coreena's uncle Donald's Photography Business. There is the endless task of following the Family Tree and my Stamp Collection gets a look in, in my 'spare' time. :-)

My 'spare' time has been developing the Special RETT ANGELS Birthday Calendar Site,
which I started in 2001. There are around 290 different Angel's photos and over 500 listed with Rett Syndrome. A monthly photographic Scrapz Book was produced covering current topics in the families lives, their adventures, pets and anything else to ease the load.
2006 I still add to the site but not as regularly.

Coreena has been home full time since finishing at Polytech and still enjoys her videos, music and doing a lot of 'watching' people and things going on around her. Her health is excellent.

December 17th 2005 she celebrated her 29th birthday.

Rob & Coreena

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Visit  IRSA's Homepage for more information & links to Rett Syndrome

16 August 2006