I hope the moderators don't mind me posting this here.
We are asking on behalf of the Mason Minniss Fund for donations.
In Goods or Dollars - however small would be really appreciated!
We know this family personally and through business.
The disease that Mason has is such a cruel one and the odds are very much stacked against this poor little fella.
Here is a link if you wish to read more..
Time is of the essence.
We also personally know the committee members who are a good bunch. They are pulling out all of the stops to move swiftly.
Hopefully the last few remaining months can be a little easier.
One hope is to send the entire family for a memorable holiday to the theme parks of Queensland.
In the next few weeks there will be fund raising events such as an auction/raffle and a Karaoke night.Venue to be announced. I will announce them here as I receive details.
If you can give please contact Anne Haworth whose contact details are listed below.
Also we can ensure your donations reach the Fund if you wish and trust us.
Below is the Fund document...........
Mason is the older son of Rob Minniss, New Vehicle Manager, CMI Portside and his partner Cheryl Nash, and the grandson of Les Nash, who is a stalwart of CMI Southside Service Division.
In May of this year, 7 year old Mason was diagnosed as having the very rare genetic disorder Metachromatic Leukodystrophy (MLD) which affects 1 in 92,000 worldwide. This disorder is devastating and is associated with gradual neurologic deterioration. At this present time, there is no treatment available however trials are currently being undertaken in Denmark by a company named Zymenex A/S with the lysosomal enzyme, Metazym. Rob & Cheryl have been in contact with the researchers at University Hospital Copenhagen, Denmark and have been assured that should positive developments come from the trial that they will be informed. They have also contacted Duke University in the USA regarding bone marrow/stem cell research but at this stage this does not appear to be a viable option. MLD is currently listed as a fatal condition.
Mason is currently under the care of Dr Janice Fletcher, Head of the Metabolic Unit at the Womenís & Childrenís Hospital. Dr Fletcher is a world leader in this field and at the end of August will be attending an international conference in Germany where the latest research results will be tabled.
A fund raising committee has been formed with the aim of supporting the family in improving Masonís quality of life. Because of the nature of this condition, it is important that we move quickly.
We are looking for donations of goods or services which can be raffled or auctioned at fund raising events in the future, or monetary donations.
Please address any donations to:
The Mason Minniss Fund
c/- CMI Southside
150 Beach Road
Christies Beach SA 5165
Tel 08 8382 9000
Any donation will be gratefully appreciated by the Minniss Family and The Mason Minniss Fund.
Tyke, I am a member of Lions International here in England, who try to help families like this.
I know there are many Lions Clubs in Australia, and if an approach is made to a local club, a joint effort could be made by a number of S/A clubs to provide support.
We seem to spend a lot of our lives Fund Raising to help other unfortunate people, mainly local but also major disasters Worldwide.
I am unable to put this appeal to my club at the moment as we are at present helping numerous local people who have lost all of their possessions in the recent floods in England.
Best of Luck with this appeal.
Have you contacted the Queensland theme parks themselves? They might donate passes.
Also the Make a wish foundation, the airlines etc.
Thanks for your very helpful replies,I've forwarded them on to Anne :)
Great bunch you are :D