The Ultimate Lift for Lauren
Donation protected
About Lauren
Lauren enjoyed a very active lifestyle in her youth up to her mid to late 20's. It wasn't uncommon for her to spend her free time horse riding, running, swimming and skiing. She had worked hard through school and University to become a CPA qualified accountant and after working for many chartered firms took up her longest position as a accounting professional with a Sydney University.
Things started to change when Lauren’s vision became troublesome and accidents that were previously passed off as clumsiness became more prevalent. Whilst doctors recommended she have an MRI on the brain and genetic testing, Lauren put it off out of pure fear for the news that something was seriously wrong.
At the age of 31, after the passing of her father in 2012, it was time Lauren looked into her symptoms and she attended the Brain and Mind Institute to be given the life changing news that she had an extremely rare genetic disorder called Spinocerebellar Ataxia – Type 7 (SCA7). As few as 1 in 100,000 carry the rogue gene and even fewer actually present with the full onset of the degeneration.
SCA7 is a neuro-degenerative disorder characterised by progressive ataxia, motor system abnormalities, dysarthria, dysphagia and retinal degeneration leading to progressive blindness. In short it slowly shuts down the brains ability to coordinate all muscle movement making the most basic of tasks like walking, talking, picking up an object, or reading and writing severely challenging. Throw on top is the onset of severe vision loss and the condition has well and truly ripped the carpet from beneath her in her prime. The condition does not affect her cognitive abilities making her completely aware of the severity of the situation.
At this point there is no cure.
With no cure, the harsh reality is that Lauren's brain will continue to shut down it's ability to coordinate movement. Her eyesight is already now considered legally blind. At this point Lauren and her husband Ben are yet to speak to any Neurologist in Australia who has firsthand experience dealing with the condition. Whilst they have traveled across the globe to speak to specialist about gene therapy to ultimately cure the condition, a treatment trial date remains uncertain.
What can you do to help?
In 2016, Lauren moved back to her family home with her husband Ben and 3 year old daughter Sienna based on the fact that she knows the layout of the house like the back of her hand, making it easier to move around and less likely to fall. Unfortunately, the house is two story, so Ben now assists by carrying Lauren up and down the stairs to mobilise.
They have embarked on installing a passenger lift so that Lauren can remain in the house however, unpredictably have been faced with some set backs with the actual location of the lift, so it does not interfere with the functionality of the house. The total install is now likely to reach the $150,000+ figure. Thankfully the Nasr Group became aware that NDIS would not fund such a project and have kindly donated their time to project manage the entire install.
Those who know Lauren, know she is resilient, tenacious and above all one stubborn cookie. Up until now she has refused even the thought of putting up her hand for assistance. This however, is project they could do with some help. Our aim is to raise as much money as we can to help her stay in the family home and maintain her independence.
Lauren enjoyed a very active lifestyle in her youth up to her mid to late 20's. It wasn't uncommon for her to spend her free time horse riding, running, swimming and skiing. She had worked hard through school and University to become a CPA qualified accountant and after working for many chartered firms took up her longest position as a accounting professional with a Sydney University.
Things started to change when Lauren’s vision became troublesome and accidents that were previously passed off as clumsiness became more prevalent. Whilst doctors recommended she have an MRI on the brain and genetic testing, Lauren put it off out of pure fear for the news that something was seriously wrong.
At the age of 31, after the passing of her father in 2012, it was time Lauren looked into her symptoms and she attended the Brain and Mind Institute to be given the life changing news that she had an extremely rare genetic disorder called Spinocerebellar Ataxia – Type 7 (SCA7). As few as 1 in 100,000 carry the rogue gene and even fewer actually present with the full onset of the degeneration.
SCA7 is a neuro-degenerative disorder characterised by progressive ataxia, motor system abnormalities, dysarthria, dysphagia and retinal degeneration leading to progressive blindness. In short it slowly shuts down the brains ability to coordinate all muscle movement making the most basic of tasks like walking, talking, picking up an object, or reading and writing severely challenging. Throw on top is the onset of severe vision loss and the condition has well and truly ripped the carpet from beneath her in her prime. The condition does not affect her cognitive abilities making her completely aware of the severity of the situation.
At this point there is no cure.
With no cure, the harsh reality is that Lauren's brain will continue to shut down it's ability to coordinate movement. Her eyesight is already now considered legally blind. At this point Lauren and her husband Ben are yet to speak to any Neurologist in Australia who has firsthand experience dealing with the condition. Whilst they have traveled across the globe to speak to specialist about gene therapy to ultimately cure the condition, a treatment trial date remains uncertain.
What can you do to help?
In 2016, Lauren moved back to her family home with her husband Ben and 3 year old daughter Sienna based on the fact that she knows the layout of the house like the back of her hand, making it easier to move around and less likely to fall. Unfortunately, the house is two story, so Ben now assists by carrying Lauren up and down the stairs to mobilise.
They have embarked on installing a passenger lift so that Lauren can remain in the house however, unpredictably have been faced with some set backs with the actual location of the lift, so it does not interfere with the functionality of the house. The total install is now likely to reach the $150,000+ figure. Thankfully the Nasr Group became aware that NDIS would not fund such a project and have kindly donated their time to project manage the entire install.
Those who know Lauren, know she is resilient, tenacious and above all one stubborn cookie. Up until now she has refused even the thought of putting up her hand for assistance. This however, is project they could do with some help. Our aim is to raise as much money as we can to help her stay in the family home and maintain her independence.
Organizer
Cheryl Sayers
Organizer
Menai NSW
