Your Story: Battle continues for boy with rare disease
IT has been 10 months now since my son Damon, 11, was diagnosed with the rare and life threatening autoimmune disease Juvenile Dermatomyositis.
His journey so far has had its up and downs, with numerous hospital admissions, adjusting his oral steroid medication, adding new medication, fatigue and weakness and many missed days from school.
This disease is so unpredictable. It is hard to plan anything as we just don't know from one day to the next on how well Damon will be.
One of the best highlights so far has been when Damon was able to get back onto his pushbike seven months after he was diagnosed.
The smile on his face said it all.
In January 2016, we hope to fly to Florida USA to attend the American Cure JM Foundation's annual three-day conference.
At this conference, we will be able to sit in on various seminars and talk with the many doctors, researchers and other parents about this disease.
We hope to get all the latest information, as well as where the doctors are at in their research.
We also want to bring back as much as possible, the latest on JDM, so we can share it with other families who are going through the same thing we are.
There is nothing like this in Australia, and no research is being done on this disease either.
To help get Damon over to the conference, we are saving as well as fundraising.
My sister Danielle has set up a crowd funding page with http://www.mycause.com.au (Damon's Hope for a Cure) and is also selling raffle tickets.
We have two AC/DC raffles going at the moment (thanks to my dad for the tickets).
One package includes two AC/DC tickets for the concert in Brisbane plus return airfares for two, as well as $300 in travel vouchers which can be used for accommodation.
A big thank you to Phil Kelly of QantasLink and DeparturePoint for his awesome donation of airfares and travel vouchers.
The second package has two AC/DC tickets for the Brisbane concert and a signed and framed Broncos jersey.
We would like to give heartfelt thanks to the staff, students and parents at St John's Primary school for all of their wonderful help and generosity in fundraising for Damon.
You all have been absolutely amazing!
Also, many more thanks go out to the Gladstone community and businesses for all their generosity, time and help.
There are too many to name here, but you know who you are. We thank you from the bottom of our hearts.
After all that Damon has been through, he can still smile, bless him.
We are taking it one day at a time and are keeping our fingers crossed and hoping that a cure will be found.
That's about all we can do.
Once again, thank you Gladstone!
- Nicci, Danny, Damon and Toby