Kaidens Dream
Donation protected
My name is Kaiden cook and I am 9 years old, I live with my mum and older sister and younger brother in cleethorpes England.
I was diagnosed with...
Autism , dyspraxia and SPD at an early age and have always found it hard to be like other children in mainstream school and make friends that can understand why I am the way that I am , I have a handful that tend to stand by me and it’s nice.
I struggle with behaviour and it’s due to frustration that my family don’t always understand the world the way I do or understand my obsession with a certain thing at a time , at the moment it’s Pokemon!
I have a squint and have always attended eye check ups every 6 months , but last February my life and my family’s changed forever after a routine check.My mum was lead into a room and was ordered not to take me anywhere because there was a mass at the back of my eyes, this was either a brain tumour or fluid retention, but either way it had made my optical nerves so swollen that my vision was at serious risk. I was sent straight to the children’s ward at my local hospital where a CT scan found a frontal cyst and a stenosis of 1 of the major vessels in my brain causing a build up of fluid. A lumbar puncture revealed my cerebral fluid to be 7 times higher than a normal child my age and draining started immediately.
This didn’t fix the problem unfortunately and in 4 months I had undergone 6 operations, all of which was unsuccessful and left me with nerve damage to my legs, I can’t walk very far without my wheel chair and I have also been left with colour blindness. My hospital transferred me urgently to Sheffield children’s where a neurologist ordered an emergency brain scan and EEG , I went to theatre the next day and had a hydrocephalus shunt fitted to my head to drain the fluid directly from my brain via tubing from the brain into my tummy.
2 months later they discovered with further scans that it wasn’t working and that my optical nerves was full yet again , my nose would just Gush with blood at even getting up from sitting,
I had 3 shunt adjustments in the hope I could return to normal school life, at this point I had only attended 3 months out of a year.
I was referred to Cambridge hospital in hope that the stenosis would be fixed with a stent, only this operation was explained to my mum as complicated and very hit and miss.
On the 23 of December I had an operation to try and help my nose bleeds but it didn’t. In February this year I became sick ( hearing things) ( seeing things) this was very scary and I told my mum I want to die I have had enough! She broke her heart and took me back to Sheffield where they did another emergency operation and removed my old shunt and replaced it with a different 1 after discovering that my fluid level was so high. I was now on operation number 11 and all in a year .
At a review 4 weeks after the new shunt was fitted it was discovered that again the pressure and fluid was high and it had been unsuccessful. My eyesight has deteriorated and now I’m incredibly short sighted , they have me glasses and I cry to my mum because I feel silly that I have a big scar on the side of my head and glasses make me feel like everyone is looking at me.
Weds the 9th of May I am going back into hospital for my 13th operation and this 1 is my biggest yet, my shunt is being removed from my head again and my belly will also be cut to remove the tubing, my back is also getting cut as the doctors are going to fit a drain directly in the lumbar area of my spine in order to keep up with the amount of CSF fluid I am producing.
This has been explained to my mum as a last resort until Cambridge are willing to try stents, the complication of this surgery is that it drains too much leaving my brain vulnerable to injury.I am scared and also feel like hospital is my second home and has been for the past year.
Iv had 2 weeks at school this year , Iv had to miss trips because the risk assessment has been too high , I couldn’t join in swimming lessons or PE with my friends for the same reasons, I have even been secluded at playtimes and lunch incase I have an accident.I don’t feel 9 and asked my mum what the point in being alive is because I have got so depressed, I was even referred to a child physiologist for help in trying to understand these thoughts.
All I really wish for is a trip to America , I love YouTube and mystic 7 and really want regional Pokemon to add to my Pokemon go account, Pokemon has been my only friend and escape through all of this. I am just hoping even if someone has a spare pound to donate , that in time the pounds will add up and I might just get my dream holiday.
Has kaidens mum I am really reluctant to put up a begging page , but being disabled myself there is no way I can afford to make his dreams come true. This makes me a failure as a mother , when someone suggested a go fund me , I had to try! Kaiden is a very special boy and a very brave child , full of anxiety all about what the future holds for him and if this operation will be successful, I have told him so many times “ this is the last 1 mate” and it’s not been, it’s ripped my heart out so many times , my other children have also had to go without me because Kaiden has needed me by his side . Even if I can’t make his dream come true I hope i can say this is the last time mate and mean it !
I was diagnosed with...
Autism , dyspraxia and SPD at an early age and have always found it hard to be like other children in mainstream school and make friends that can understand why I am the way that I am , I have a handful that tend to stand by me and it’s nice.
I struggle with behaviour and it’s due to frustration that my family don’t always understand the world the way I do or understand my obsession with a certain thing at a time , at the moment it’s Pokemon!
I have a squint and have always attended eye check ups every 6 months , but last February my life and my family’s changed forever after a routine check.My mum was lead into a room and was ordered not to take me anywhere because there was a mass at the back of my eyes, this was either a brain tumour or fluid retention, but either way it had made my optical nerves so swollen that my vision was at serious risk. I was sent straight to the children’s ward at my local hospital where a CT scan found a frontal cyst and a stenosis of 1 of the major vessels in my brain causing a build up of fluid. A lumbar puncture revealed my cerebral fluid to be 7 times higher than a normal child my age and draining started immediately.
This didn’t fix the problem unfortunately and in 4 months I had undergone 6 operations, all of which was unsuccessful and left me with nerve damage to my legs, I can’t walk very far without my wheel chair and I have also been left with colour blindness. My hospital transferred me urgently to Sheffield children’s where a neurologist ordered an emergency brain scan and EEG , I went to theatre the next day and had a hydrocephalus shunt fitted to my head to drain the fluid directly from my brain via tubing from the brain into my tummy.
2 months later they discovered with further scans that it wasn’t working and that my optical nerves was full yet again , my nose would just Gush with blood at even getting up from sitting,
I had 3 shunt adjustments in the hope I could return to normal school life, at this point I had only attended 3 months out of a year.
I was referred to Cambridge hospital in hope that the stenosis would be fixed with a stent, only this operation was explained to my mum as complicated and very hit and miss.
On the 23 of December I had an operation to try and help my nose bleeds but it didn’t. In February this year I became sick ( hearing things) ( seeing things) this was very scary and I told my mum I want to die I have had enough! She broke her heart and took me back to Sheffield where they did another emergency operation and removed my old shunt and replaced it with a different 1 after discovering that my fluid level was so high. I was now on operation number 11 and all in a year .
At a review 4 weeks after the new shunt was fitted it was discovered that again the pressure and fluid was high and it had been unsuccessful. My eyesight has deteriorated and now I’m incredibly short sighted , they have me glasses and I cry to my mum because I feel silly that I have a big scar on the side of my head and glasses make me feel like everyone is looking at me.
Weds the 9th of May I am going back into hospital for my 13th operation and this 1 is my biggest yet, my shunt is being removed from my head again and my belly will also be cut to remove the tubing, my back is also getting cut as the doctors are going to fit a drain directly in the lumbar area of my spine in order to keep up with the amount of CSF fluid I am producing.
This has been explained to my mum as a last resort until Cambridge are willing to try stents, the complication of this surgery is that it drains too much leaving my brain vulnerable to injury.I am scared and also feel like hospital is my second home and has been for the past year.
Iv had 2 weeks at school this year , Iv had to miss trips because the risk assessment has been too high , I couldn’t join in swimming lessons or PE with my friends for the same reasons, I have even been secluded at playtimes and lunch incase I have an accident.I don’t feel 9 and asked my mum what the point in being alive is because I have got so depressed, I was even referred to a child physiologist for help in trying to understand these thoughts.
All I really wish for is a trip to America , I love YouTube and mystic 7 and really want regional Pokemon to add to my Pokemon go account, Pokemon has been my only friend and escape through all of this. I am just hoping even if someone has a spare pound to donate , that in time the pounds will add up and I might just get my dream holiday.
Has kaidens mum I am really reluctant to put up a begging page , but being disabled myself there is no way I can afford to make his dreams come true. This makes me a failure as a mother , when someone suggested a go fund me , I had to try! Kaiden is a very special boy and a very brave child , full of anxiety all about what the future holds for him and if this operation will be successful, I have told him so many times “ this is the last 1 mate” and it’s not been, it’s ripped my heart out so many times , my other children have also had to go without me because Kaiden has needed me by his side . Even if I can’t make his dream come true I hope i can say this is the last time mate and mean it !
Organizer
Rachael Cook
Organizer
