Please help Adam battle a rare genetic disease

Adam was born with a very rare genetic disease called Cornelia De Lange Syndrome. It's pretty tough on him. He can’t eat, so he’s been fed through a tube into his stomach his whole life. He’s been deaf since birth so he can’t talk, his body and limbs are dwarf-ish. He can’t dress himself or go to the toilet. He is very developmentally delayed and always will be. He requires someone with him every moment he’s awake. That’s the bad news. But there is good news.

Adam loves his life (just look at that smile), he loves to touch his toys, he loves to go to daycare and be with other children. He couldn’t walk for such a long time, but he managed to reach that goal last November at age 3 and he gets better at it every day.

These doors into the world are opened for Adam because of hours and hours of one-on-one attention from devoted carers 5 days a week. They lift him up, get him moving, keep him motivated. They give him a chance at a more full life. But the funding is always a challenge.

CCS Disability Action only fund carers for 3 hours a day - but not during school holidays. That’s 12 weeks a year with no funding. On top of that, Adam’s carers had to be paid as employees during Covid 19 but they didn’t work during any of the lockdowns - it used up so much of our budgets.

UPDATE April 2021: Adam had surgery to insert grommets in March. Prior to this, brain scans showed an intact hearing response - but no sounds could make it through as microcephaly (tiny head) meant his ear canals were totally blocked. The operation was a success the fluid was drained and tests show Adam now has near-normal hearing. He has quickly started making new sounds and last week said his first clear word "Mum". He said it to his Dad - but we'll take it! :) We are now redoubling our efforts to help Adam speak - and eat via his mouth this year.

Cornelia de Lange syndrome is so all-encompassing (https://en.wikipedia.org/wiki/Cornelia_de_Lange_syndrome). Any one of its symptoms by itself would be a major challenge for any child. But Adam deals with all of them with a smile on his face.

Any donations received will go towards funding one-on-one carers and specialist therapy for Adam.

Thank you for your kindness in helping our little boy on his life's journey.