Building Max's Future
Donation protected
Our son Maximilian was born in October 2012 with a mutation of Nemo deficiency syndrome, which makes him very vunreable to infection, chronic colitis and bacterial skin conditions. But he also suffers from hypoplastic lungs and a dysplaisic thorax, which means his lungs are underdevelopped and not growing sufficiently. His thorax (rib cage) is very narrow at the top and is growing forward rather then sideways which may cause him breathing difficulties in the future.
Max was born with very low muscle tone and control, which makes simple tasks very difficlut or impossible. Max has feeding issues and is mainly tube fed, as his swallow is not safe for liquids.
He was very poorly at birth and spent the first 10 months of his life on the edge of life. He suffered life threatening infections, several cases of pneumonia, a cardiac arrest, life threatening blood poisoning and so much more.
But despite all of this, Max is a happy child. He is such a trooper! He loves every minute of interraction and tries very hard to become more independent! We are so proud of our little boy and everything he has achieved!
Due to all his conditions, he is not expected to survive his 19th Birthday. So every day counts, every opportunity or ability given is quality of life!
We want to be able to give him a happy and qualitative childhood. Sadly this is not possible without equipment! Everything; sleeping, bathing, sitting, standing, eating; everything can only be achieved safely with a piece of equipement suitable to his very special needs.
Our house is not suitable for a life with Max, but we want to carry on being able to care for him at home. Enjoy life with Max for as long as he is here.
This has inspired us to fundraise. Raising funds for a extension, to allocate a specialised bedroom and bathroom for Max, but also to allow him to access the house wih his wheelchair and move or be moved from room to room safely.
Every little helps! We would be grateful for any help offered. Max is such an inspirational little boy, you can make make his life better, help him have quality of life!
Thank you!
Max was born with very low muscle tone and control, which makes simple tasks very difficlut or impossible. Max has feeding issues and is mainly tube fed, as his swallow is not safe for liquids.
He was very poorly at birth and spent the first 10 months of his life on the edge of life. He suffered life threatening infections, several cases of pneumonia, a cardiac arrest, life threatening blood poisoning and so much more.
But despite all of this, Max is a happy child. He is such a trooper! He loves every minute of interraction and tries very hard to become more independent! We are so proud of our little boy and everything he has achieved!
Due to all his conditions, he is not expected to survive his 19th Birthday. So every day counts, every opportunity or ability given is quality of life!
We want to be able to give him a happy and qualitative childhood. Sadly this is not possible without equipment! Everything; sleeping, bathing, sitting, standing, eating; everything can only be achieved safely with a piece of equipement suitable to his very special needs.
Our house is not suitable for a life with Max, but we want to carry on being able to care for him at home. Enjoy life with Max for as long as he is here.
This has inspired us to fundraise. Raising funds for a extension, to allocate a specialised bedroom and bathroom for Max, but also to allow him to access the house wih his wheelchair and move or be moved from room to room safely.
Every little helps! We would be grateful for any help offered. Max is such an inspirational little boy, you can make make his life better, help him have quality of life!
Thank you!
Organizer
Tanja Chai
Organizer
