Hello Everyone, obviously the conference updates kind of went out the window!
It was such a busy time so my apologies for not putting anything up sooner!
As you will have worked out by now the conference was INCREDIBLE!!!!
We talked to the doctors and caught up on the research that has been done and we now have a clearer idea of what to expect with Dylan and what his and our future holds!

There is a new type of testing that can pinpoint within the 11th chromosome the part that has been deleted and what skills it will interfere with so we should be able to find out what we need to focus on and go from there.
The hope that this has given us is something that will translate to a better life for Dylan knowing what is to come as much as possible!

The other familes are sooooo nice and it was like a family reunion even though we had only just met them there was just this connection in meeting them that I will never be able to put into words!

The whole experience was just an amazing whirlwind and worth every second!
The conferences are every 2 years and we hope to be able to save enough to go to the next one, they also have european ones as well which everyone said are amazing!

As you know we also made it to disneyland and did we have a ball there, Dylan loved meeting goofy and all the charecters and we had the best time just watching his reaction although disneyland is for kids we had a blast as well!
The whole things was just wonderful and something we will talk about for a long tim to come!

I hope to keep everyone posted on Dylans progress on this website and also post pictures of special events coming up as well!

(Just bear with me as sometimes I am very busy and it takes awhile between posts!!)

Keep checking regularly and if you have any questions please drop me a line!!

Love to all

Marie (aka Mum)

26/6/08 Day 2 of the conference!
We have met the other families and we have been attending sessions and WOW this is soooooo brilliant, there are the majority of top doctors in the field of Jacobsen's Syndrome here and the knowledge they are passing down will be so valuable to us!
The other families are amazing and to be able to talk to other people has been just mind blowing!

We cannot thank all the people who have helped us get here enough this is the most amazing experience of our lives!

Hello to everyone at home and thank you for your messages they are great keep them coming!

Special hello to all the kids and staff at Sandon and especially Purple Class, we miss you all and Dylan is telling everyone about you and showing off some of his work that we took to america with us!

Better sign off for now still cant put up photos this computer wont let me but i will try my hardest to find one soon that will!

(oh by the way we had dinner last night and guess who dropped by to sing for us Elvis!!!! well actually one of the grandfathers dressed up but boy was he great!)

Love again to you all!

Marie, Mark and Dylan :-)


Hello Everyone, welcome to our first update!!!
It is the 22nd here in the states and still tuesday although it's wednesday at home in oz!
We are here in sunny San Diego enjoying the lovely weather and waiting for the conference to start.

The flight over here was great and we had alot of fun and Dylan enjoyed it very much!
The stopover in Auckland was very quick as we had to make our next plane and they had to find Dylan's wheelchair which had been put in the wrong spot!
But they found it and we made it to LA then we came to San Diego in a very fancy Licoln town car!!
Our hotel is very beautiful!
We spent the day today on a tour of Old Town San Diego and we had a look at lot's of things and Dylan really enjoyed it when the conductor used his name and gave him tokens as souvenirs!
I am trying to upload some pictures for you but not having much luck so keep an eye out to see if I fugured it out!
Had best sign off for now as Dylan is falling alseep on Dad's lap it's 5.20pm here and after a long day he is very tired!

Hello to you all and we will put more updates on here every couple of days!
Missing everyone!

Lot's of Love
Marie, Mark and Dylan :-)