Well, Welcome to our new Blog!!
We have decided to change from the Caringbridge site (www.caringbridge.org/visit/jaspermiles) as it was not proving easy to upload photos!!
This one below is one of my favourite photos... it was taken at Santa's Village in the White Mountains, New Hampshire, and was so much fun for Jasper, Paul and I.

This is my baby, isn't he gorgeous?!













Anyway, for those new to our story, Jasper is a fiesty 5 year old. He is the only child that Paul and I (Brooke) have. On Feb 1st 2007, he was diagnosed with a rare genetic condition called Fanconi Anemia. To learn a bit about this disease, just read to the right of the page..

He is small for his age - just over 100cm (40.5inches) and 13kg (28.5 pound). He was 1.8kg when he was born (4 pound). He also has some other things that are "typical FA", like his eye shape, "dodgy" thumb and some other things.

Jasper has to go to the local childrens hospital every 3 months for a blood test. Here they look at what his blood levels are like. This will be an indicator when he needs to go for a bone marrow transplant. We keep our fingers crossed that this never needs to happen, and his blood stays as healthy as it has been. He also has an operation once a year to take a sample of bone marrow - again for analysis to see what is happening. We monitor and wait. let's hope we wait a long, long time before we need to do anything!

As this disease is so rare, it is hard to find any doctor in Western Australia that has any experience. We are lucky that there have been a few cases (currently 3 other kids in WA diagnosed and post-transplant), that have all been through the children's hospital..

Paul and I have been fortunate that we have been able to come to America last year and this year (2007 and 2008) to attend a special FA Camp at Camp Sunshine. Here we get to hear from doctors that have specialist experience in FA, so can then go back home to Australia and let our doctors know what we need.

And it is from America that I am writing today.. We have been here since the 2nd August and don't leave until 5th September. Camp Sunshine was from 8 - 13 August, and the rest of the time we have been touring around. Currently we are in a nice hotel in Oswego, near Syracuse NY (just in time for the State Fair).

This year has been more relaxed for us, not so much running around and things.. I will post again later today or tomorrow and add some of our favourite shots so far.

Please sign the Comments section.. we love to know who has been to visit!!

thanks for reading.

Brooke