Luke's Voice
Donation protected
Have you ever been having a conversation with someone and struggled to get a word in edge ways? Very frustrating isn't it! Well imagine this every day of your life, your mind is full of interesting things, questions and stories, but you have no way of getting it out.
This is how my son, Luke, lives each day.
Luke is an intelligent young boy.
He was born in 2004 with an extremely rare neurological condition. Schizencephaly. This condition effects just 1 in a 100,000 births (including still births).
Schizencephaly, meaning clefts or slits in the brain shows many different symptoms. It is often life limiting but because of the lack of research and known cases in the UK it is very difficult to find out much about it.
Luke was diagnosed in 2005 with A cleft on the left hemisphere of his brain, a partial cleft on the right hemisphere and polymicrogyria.
I was told that Luke would not have much of a life, he would have severe epilepsy, cerebral palsy, severe learning disabilities, vision problems and would be a very poorly child.
Luke has defied all odds. Despite having full body cerebral palsy, spasticity, muscle spasms, GERD, Dysphasia, two hip dislocations, severe scoliosis, many lengthy surgeries, being in constant pain , endless medication, weight loss and a nasogastric feeding tube he has shown himself to be a very charming, intelligent boy, learning at age appropriate level if not above.
Luke is a non verbal hyper active child stuck in a "broken" body.
Having a conversation or getting his point accross, even trying to tell me what he wants to eat or drink can be a lengthy process of constant guessing games.
Luckily Luke is blessed with a lot of patience and a great sense of humour so that he can laugh a lot of his frustration away.
But this isn't always the case.
With unfamiliar people he becomes very frustrated at himself and them. He becomes angry and upset and often will try to bite himself out of frustration.
A couple of weeks ago, at his amazing school, he got the opportunity to trial an "eye gaze communication aid" . This is an extremely clever device which calibrates Luke's eyes to the camera, using them as the mouse.
In other words no limbs needed!
This has meant that Luke has been able to read his books, write emails to family and friends, play games, write out pieces of work and use his voice! All unaided.
Luke comes alive when he is given this piece of equipment but unfotunately it's not his to keep.
We are aiming to raise money to fund his own machine, it can be clamped to his wheelchair and go everywhere with him.
We will be updating weekly with photos and information.
Thank you all for reading and for all the support so far xxx
This is how my son, Luke, lives each day.
Luke is an intelligent young boy.
He was born in 2004 with an extremely rare neurological condition. Schizencephaly. This condition effects just 1 in a 100,000 births (including still births).
Schizencephaly, meaning clefts or slits in the brain shows many different symptoms. It is often life limiting but because of the lack of research and known cases in the UK it is very difficult to find out much about it.
Luke was diagnosed in 2005 with A cleft on the left hemisphere of his brain, a partial cleft on the right hemisphere and polymicrogyria.
I was told that Luke would not have much of a life, he would have severe epilepsy, cerebral palsy, severe learning disabilities, vision problems and would be a very poorly child.
Luke has defied all odds. Despite having full body cerebral palsy, spasticity, muscle spasms, GERD, Dysphasia, two hip dislocations, severe scoliosis, many lengthy surgeries, being in constant pain , endless medication, weight loss and a nasogastric feeding tube he has shown himself to be a very charming, intelligent boy, learning at age appropriate level if not above.
Luke is a non verbal hyper active child stuck in a "broken" body.
Having a conversation or getting his point accross, even trying to tell me what he wants to eat or drink can be a lengthy process of constant guessing games.
Luckily Luke is blessed with a lot of patience and a great sense of humour so that he can laugh a lot of his frustration away.
But this isn't always the case.
With unfamiliar people he becomes very frustrated at himself and them. He becomes angry and upset and often will try to bite himself out of frustration.
A couple of weeks ago, at his amazing school, he got the opportunity to trial an "eye gaze communication aid" . This is an extremely clever device which calibrates Luke's eyes to the camera, using them as the mouse.
In other words no limbs needed!
This has meant that Luke has been able to read his books, write emails to family and friends, play games, write out pieces of work and use his voice! All unaided.
Luke comes alive when he is given this piece of equipment but unfotunately it's not his to keep.
We are aiming to raise money to fund his own machine, it can be clamped to his wheelchair and go everywhere with him.
We will be updating weekly with photos and information.
Thank you all for reading and for all the support so far xxx
Organizer
Lowis McAuley
Organizer
