Shave for Benny
Beschermde donatie
Ben is a unique little 4 year old boy. He is one of 49 known people worldwide, born with a rare chromosome disorder called XQ28 duplication and he is 1 of 10 diagnosed cases worldwide with his specific type of chromosome duplication.
Most XQ28 chromosome duplications are duplicated once or twice. Ben's have been duplicated at least 4 times, possibly more.
This has rendered Ben severely disabled. The older Ben becomes the worse the condition will get. He has very limited vision and has intellectual and physical disabilities.
It is rare for individuals with this affliction to live beyond 25 years.
On top of all this, Ben was born without the Corpus Callosum (the middle part of the brain joining two hemispheres), further inhibiting his intellectual capacity.
He requires constant medical attention as well as ongoing changes to this disability equipment as he grows.
With all the challenges Ben's family have had to endure, he still brings them so much joy. Ben has his own little personality and his unique little noises and mannerisms which are gorgeous.
Anyone who meets Ben can't help but adore him.
So now that you know a bit about Ben, my beautiful partner Sean who is Ben’s amazing dad and his great friend Richard have decided to Shave their heads for Ben to help raise much needed money for medications ( some required $3,000 per month) and equipment.
We would love to get the community on board to see if we can reach the $1000 or more.
They will shave their heads on 15th June at approximately 4pm which I will share as a live video!.
Thank you all.
Most XQ28 chromosome duplications are duplicated once or twice. Ben's have been duplicated at least 4 times, possibly more.
This has rendered Ben severely disabled. The older Ben becomes the worse the condition will get. He has very limited vision and has intellectual and physical disabilities.
It is rare for individuals with this affliction to live beyond 25 years.
On top of all this, Ben was born without the Corpus Callosum (the middle part of the brain joining two hemispheres), further inhibiting his intellectual capacity.
He requires constant medical attention as well as ongoing changes to this disability equipment as he grows.
With all the challenges Ben's family have had to endure, he still brings them so much joy. Ben has his own little personality and his unique little noises and mannerisms which are gorgeous.
Anyone who meets Ben can't help but adore him.
So now that you know a bit about Ben, my beautiful partner Sean who is Ben’s amazing dad and his great friend Richard have decided to Shave their heads for Ben to help raise much needed money for medications ( some required $3,000 per month) and equipment.
We would love to get the community on board to see if we can reach the $1000 or more.
They will shave their heads on 15th June at approximately 4pm which I will share as a live video!.
Thank you all.
Organisator en begunstigde
Marisa King
Organisator
Bentleigh East VIC
Sean Malcolm
Begunstigde
