The Gift Of Sight
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Hi my name is Amanda and I am here to tell you about two incredibly amazing little boys that just happen to be my nephews.
Benny and Ashton were both born with an extremly rare eye conditon called Leber's Congenital Amaurosis.
Leber's is an eye disorder that affects the retina, which is the tissue at the back of the eye that detects light and colour. People with this disorder typically have severe visual impairment begining in infancy.
In rare cases, delayed development and intellectual disabiltility can go hand in hand with Leber's.
Leber's Congenital Amaurosis occurs in 2 -3 per 100,000 newborns.
Leber's results from a mutation in at least 14 genes all of which are necessary for normal vision. Leber's usually has an autosomal recessive pattern of inheritance. Meaning both parents carry a mutated gene but typically do not show signs or symptoms of the condition.
Now to tell you a bit about these incredible boys, Benny is a ten year old typical boy. He loves Harry Potter, Avengers and is a member of his local Boy Scouts. He is a kind, sensitive and very intelligent kid. Benny has 20/400 vision meaning he is legally blind. He wears glasses and can see colours, shapes and silhouettes. But he does not see details, such as facial features, words on a page, ect.
Ashton is an eight year old boy and about as far from typical as you can get. Any one that knows him would say that is what they love about him.
Ashton has virtally no vision, and is considered to have profound blindness. He relys heavily on sounds and in fact enjoys listening to them. His favorite past time is listening to music such as Adele, Elvis amoung other greats. And of course any fan or air conditioner he can sit next too.
Ashton has also been diagnosed with Autism and OCD. Sometimes making school settings and friendships challenging.
I would love to raise money that will go towards to two things:
Being that Benny has some vision and we live in an incredible time in technology there is an amazing device called E Sight. A wearable, handsfree headset which houses a small, high speed camera that captures everything the user is looking at. The captured video is sent back to the headset and displayed on two powerful organic-LED screens in front of the users eyes. Typically, these full colour images can be seen cleary in essense breaking through most underlying eye condtions. All of this happens in real time, so the user can instantly switch from near vision (reading a book) to midrange ( looking up to see who just stepped in a room) to long range (looking out the window to see if its raining).
As you can imagine this kind of technology is expensive, however if it will allow a child to see their mothers face for the first time, the detail of a flower, or read his favorite book then it is most defiently worth every penny.
The second thing the money will go towards is for Ashton. Beacuse Ashton has no vision E Sight would not help him in any way. However theraputic horseback riding would work wonders. Ashton is an anmial lover and any oppurtunity he has had with animals, being dogs, cats or horses a different side of him has come out. They calm him, and he calms them.
There is a local riding club specializing in this kind of therapy. Money raised would go towards paying for these lessons, which run in Spring and Fall for ten weeks.
I would like to be able to have all monies raised in 2 months time, and gift them with what i think we all so easily take for granted.
To know these boys is to love them. They along with their parents have gone through more then I think anyone could imagine. They are a hard working family that has had so many set backs and yet still remains strong, happy and full of love.
I know they would be forever gratefull to have these oppurtunies be a possibility for these two very special boys.
"My soul is the window, through which my eyes see"
Benny and Ashton were both born with an extremly rare eye conditon called Leber's Congenital Amaurosis.
Leber's is an eye disorder that affects the retina, which is the tissue at the back of the eye that detects light and colour. People with this disorder typically have severe visual impairment begining in infancy.
In rare cases, delayed development and intellectual disabiltility can go hand in hand with Leber's.
Leber's Congenital Amaurosis occurs in 2 -3 per 100,000 newborns.
Leber's results from a mutation in at least 14 genes all of which are necessary for normal vision. Leber's usually has an autosomal recessive pattern of inheritance. Meaning both parents carry a mutated gene but typically do not show signs or symptoms of the condition.
Now to tell you a bit about these incredible boys, Benny is a ten year old typical boy. He loves Harry Potter, Avengers and is a member of his local Boy Scouts. He is a kind, sensitive and very intelligent kid. Benny has 20/400 vision meaning he is legally blind. He wears glasses and can see colours, shapes and silhouettes. But he does not see details, such as facial features, words on a page, ect.Ashton is an eight year old boy and about as far from typical as you can get. Any one that knows him would say that is what they love about him.Ashton has virtally no vision, and is considered to have profound blindness. He relys heavily on sounds and in fact enjoys listening to them. His favorite past time is listening to music such as Adele, Elvis amoung other greats. And of course any fan or air conditioner he can sit next too.
Ashton has also been diagnosed with Autism and OCD. Sometimes making school settings and friendships challenging.
I would love to raise money that will go towards to two things:
Being that Benny has some vision and we live in an incredible time in technology there is an amazing device called E Sight. A wearable, handsfree headset which houses a small, high speed camera that captures everything the user is looking at. The captured video is sent back to the headset and displayed on two powerful organic-LED screens in front of the users eyes. Typically, these full colour images can be seen cleary in essense breaking through most underlying eye condtions. All of this happens in real time, so the user can instantly switch from near vision (reading a book) to midrange ( looking up to see who just stepped in a room) to long range (looking out the window to see if its raining).
As you can imagine this kind of technology is expensive, however if it will allow a child to see their mothers face for the first time, the detail of a flower, or read his favorite book then it is most defiently worth every penny.
The second thing the money will go towards is for Ashton. Beacuse Ashton has no vision E Sight would not help him in any way. However theraputic horseback riding would work wonders. Ashton is an anmial lover and any oppurtunity he has had with animals, being dogs, cats or horses a different side of him has come out. They calm him, and he calms them.
There is a local riding club specializing in this kind of therapy. Money raised would go towards paying for these lessons, which run in Spring and Fall for ten weeks.
I would like to be able to have all monies raised in 2 months time, and gift them with what i think we all so easily take for granted.
To know these boys is to love them. They along with their parents have gone through more then I think anyone could imagine. They are a hard working family that has had so many set backs and yet still remains strong, happy and full of love.
I know they would be forever gratefull to have these oppurtunies be a possibility for these two very special boys.
"My soul is the window, through which my eyes see"
Organisator
Amanda Vitt
Organisator
East Selkirk, MB