Trike 4 Katie
Donation protected
Meet Katie - she is a beautiful and very intelligent young lady with the biggest smile you will ever see.....
Now... imagine being trapped in a body that doesn't work and everyday it works a little less.
You can't speak but you can understand....you can't take care of yourself but you know exactly how to. You have opinions and preferences but nobody hears you.
You yearn for meaningful friendships and to be seen for the real you inside....but who sees you?
Imagine.....
Katie was born a normal, healthy baby but stopped reaching her milestones at 6 months and from then on she required intensive therapies. At the age of 6 years things took a big turn for the worse. She required a major operation on her hips as she was no longer able to walk without them dislocating . Following on from the operation she was put into a full body cast and whilst in the cast she developed involuntary whole body movements and could not keep still.
Her condition baffled top specialists and the years that followed were a constant mix of hospitalisations and rehabilitation. After each flare up Katie had to learn to swallow, feed herself, use a toilet, and walk- and each time she never regained her previous level of function.
At the age of 12, medication and 'waiting it out' ceased to be effective. She was resuscitated on a daily basis. To control these movements she was put into a coma for 3 months as there was no medication that could help her.
Her body had worn out- the relentless involuntary violent thrashing movements simulated that of running a marathon with no rest in sight. This caused damage and bruising to her limbs and her skin to to bleed and rub off. It also caused the muscles in her throat to constrict and secretions to build up in her airways and she required constant suctionioning and resuscitation. She was tube fed and her veins had disappeared- thus requiring a central line for medication.
After being brought out of the coma and another 3 months of hospital, a mix of medications had now built up in her system and were able to stabilise her. She again underwent intensive therapy. Unfortunately a few months later she was back in hospital.
A radical treatment, never before tried on someone like Katie, was offered as a last hope of survival - no guarantees. Katie was fitted with a Deep Brain Stimulator which sends electrical shocks to the brain to override the wrong signals it was sending out. The operation was successful in stopping the involuntary movements and she left hospital. Further surgery every few years is required to change the device battery and it is unknown as to the length of time this device will continue to aid Katie's life and hold back the underlying condition.
Whilst the involuntary movements are being controlled by the implant, unfortunately the underlying condition is still there and causes jerks, contractures, jaw dislocation and body stiffness. She now has very little mobility left, she can lift up her head and has very limited arm movement. She can no longer feed herself, walk, or use her hands effectively. She relies on the support of others to perform all daily personal care tasks that we take for granted.
Academically she is behind as she missed so much school but despite this she achieved her HSC. Communication is very difficult and frustrating for her, she is unable to speak now and most of her communication comes from eye gaze and telepathy with her Mum who is very highly tuned to Katie.
There is no diagnosis, no cause, no family history and no explanation and all genetic testing thus far has been negative.
Every day is a challenge for both Katie and her beautiful Mum, just the 2 of them to overcome all of the daily battles to get Katie through another day. Carers can be unreliable making it difficult for Mum to leave Katie if she wants to go out. Due to Katie's disability she does not have a circle of friends like a regular 22 year old would have - to go out and have fun and confide in.
Over the last couple of years Mum has made friends in the biking community and her biker friends have decided that life can be made better for Katie and her Mum so the idea of 'Trike 4 Katie' was born.
The hope is to raise enough money to purchase a customised trike so that Katie can ride as a pillion passenger giving both Mum and daughter a social life they can enjoy together.
Having a trike means that Katie's quality of life will be enhanced as she will be able to mix in a social circle- form friendships and at the same time be supported by her mum - the person she feels most safe with and the one that understands what she is thinking.
It means her mum doesn't need to worry or feel guilty about leaving her behind and can finally feel it is ok to relax and enjoy herself.
This is an enormous challenge so we are looking for donations, sponsors and support so that this can be achieved sooner rather than later - with Katie's condition being degenerative the clock is ticking.
Please help us to spread the word and share the link to this page and please donate if you can - every dollar helps!
Now... imagine being trapped in a body that doesn't work and everyday it works a little less.
You can't speak but you can understand....you can't take care of yourself but you know exactly how to. You have opinions and preferences but nobody hears you.
You yearn for meaningful friendships and to be seen for the real you inside....but who sees you?
Imagine.....
Katie was born a normal, healthy baby but stopped reaching her milestones at 6 months and from then on she required intensive therapies. At the age of 6 years things took a big turn for the worse. She required a major operation on her hips as she was no longer able to walk without them dislocating . Following on from the operation she was put into a full body cast and whilst in the cast she developed involuntary whole body movements and could not keep still.
Her condition baffled top specialists and the years that followed were a constant mix of hospitalisations and rehabilitation. After each flare up Katie had to learn to swallow, feed herself, use a toilet, and walk- and each time she never regained her previous level of function.
At the age of 12, medication and 'waiting it out' ceased to be effective. She was resuscitated on a daily basis. To control these movements she was put into a coma for 3 months as there was no medication that could help her.
Her body had worn out- the relentless involuntary violent thrashing movements simulated that of running a marathon with no rest in sight. This caused damage and bruising to her limbs and her skin to to bleed and rub off. It also caused the muscles in her throat to constrict and secretions to build up in her airways and she required constant suctionioning and resuscitation. She was tube fed and her veins had disappeared- thus requiring a central line for medication.
After being brought out of the coma and another 3 months of hospital, a mix of medications had now built up in her system and were able to stabilise her. She again underwent intensive therapy. Unfortunately a few months later she was back in hospital.
A radical treatment, never before tried on someone like Katie, was offered as a last hope of survival - no guarantees. Katie was fitted with a Deep Brain Stimulator which sends electrical shocks to the brain to override the wrong signals it was sending out. The operation was successful in stopping the involuntary movements and she left hospital. Further surgery every few years is required to change the device battery and it is unknown as to the length of time this device will continue to aid Katie's life and hold back the underlying condition.
Whilst the involuntary movements are being controlled by the implant, unfortunately the underlying condition is still there and causes jerks, contractures, jaw dislocation and body stiffness. She now has very little mobility left, she can lift up her head and has very limited arm movement. She can no longer feed herself, walk, or use her hands effectively. She relies on the support of others to perform all daily personal care tasks that we take for granted.
Academically she is behind as she missed so much school but despite this she achieved her HSC. Communication is very difficult and frustrating for her, she is unable to speak now and most of her communication comes from eye gaze and telepathy with her Mum who is very highly tuned to Katie.
There is no diagnosis, no cause, no family history and no explanation and all genetic testing thus far has been negative.
Every day is a challenge for both Katie and her beautiful Mum, just the 2 of them to overcome all of the daily battles to get Katie through another day. Carers can be unreliable making it difficult for Mum to leave Katie if she wants to go out. Due to Katie's disability she does not have a circle of friends like a regular 22 year old would have - to go out and have fun and confide in.
Over the last couple of years Mum has made friends in the biking community and her biker friends have decided that life can be made better for Katie and her Mum so the idea of 'Trike 4 Katie' was born.
The hope is to raise enough money to purchase a customised trike so that Katie can ride as a pillion passenger giving both Mum and daughter a social life they can enjoy together.
Having a trike means that Katie's quality of life will be enhanced as she will be able to mix in a social circle- form friendships and at the same time be supported by her mum - the person she feels most safe with and the one that understands what she is thinking.
It means her mum doesn't need to worry or feel guilty about leaving her behind and can finally feel it is ok to relax and enjoy herself.
This is an enormous challenge so we are looking for donations, sponsors and support so that this can be achieved sooner rather than later - with Katie's condition being degenerative the clock is ticking.
Please help us to spread the word and share the link to this page and please donate if you can - every dollar helps!
Organizer
Caro Lovelace
Organizer
Barrack Heights NSW
