We have applied for and been granted official sanction (CP6191) from the office of fair trading in QLD to fundraise for our son Ryder. Ryder is 5 years old and only the size of a 18 month old weighing only 9kgs.
Ryder was born with a rare syndrome called Kabuki Syndrome a 1-32000 births anomalie. Major problems at birth included a congenital heart disease, bowel problems, only one kidney, hearing problems, spine problems and low muscle tone. Post his heart correction surgery at 1 year of age he suffered a brain injury which set him back to that of a new born. At age 5 he does some basic signing, can say mum and vocalise the name 'Emma' as he loves the wiggles but has never said dad or his sisters name 'Ava' and at age 5 this is hard for any parent.
Ryder has lots of medical appointments and therapies to help him in areas including to walk, eat, speech, hydro and General physio. To date our out of pocket expenses have not been too bad however we have used all of our $12000 BetterStart allowance and cannot access further funding until the NDIS starts in Brisbane which is 1 July 2018 some 2 years away. Ryder is set to start school next year and we have a wheelchair on order as he cannot go to school in a pram.
If we can get family friends and public support we hope to raise $20000 however rest assured if we go over that our sanction states that extra money will go to the Supporting Aussie Kids with Kabuki Syndrome charity which we hold dear to our heart and they do so much to support the small amount of kids nationally they know of. In 2012 we raised in excess of $20000 for Heartkids QLD however this time we need your support for Ryder in order that he has every chance to be a normal child with normal opportunities.
In anticipation of your support and on behalf of our family we thank you. Ryder has a Facebook page called Ryders Broken Heart if you want to keep track of his progress.