Hope for Olivia
Donation protected
My name is Alison and the beautiful girl in the photo is my 8 year old daughter Olivia.
Olivia has a Progressive Degenerative Neurological disorder called Battens Disease - type CLN6. With no cure, this disorder will eventually claim her short life and will take all of her mental and physical abilities before doing so.
Battens Disease is the most common form of a group of Neurological disorders called Neuronal Ceroid Lipofuscinoses (NCL's).
The sad fact of these diseases is that children like my daughter, lead a perfectly healthy and normal life initially. They develop and learn skills as normal and sometimes in advance for their age. But between the ages of 2-4, it all stops, and then the regression starts. Symptoms such as clumsiness, stumbling, repetitive speech and seizures then start.
http://www.battens.org.au/what-batten-disease
This is Olivia's story:
____________________________________________________________
Olivia was born on 15th January 2008 11 days late and perfectly healthy. Like any other child, Olivia was a fun loving, happy baby and reached all of her milestones as a baby and toddler. Her favourite activities were anything to do outside, in particular soccer, riding her bike and going to the beach.
When she reached the age of around 3 years, we noticed that her speech had not fully developed. She could sing nursery rhymes and ask questions but her sentences were limited to a maximum of 4 words.
A few more months passed like this with no real improvement and she seemed to stop progressing even at school. We then started to notice that she was becoming very clumsy. She would often bump into things or just fall over for no reason. It was then, we saw a Paediatrician who immediately ordered an MRI scan of the brain and spine. Results came back with nothing of concern. We were then referred to a Neurologist. He started testing for lots of things, none of which we had any understanding of.
Any test results taken at that time all came back negative. So a few more months passed and during this period we were in an out of hospital as Olivia began to deteriorate. She could hardly walk or talk and always seemed so tired.
Eventually, Olivia was admitted to Princess Margaret Hospital in Perth for some more testing. The results showed that she was having silent epileptic fits and a great deal of them. We were so relieved to find this out. We couldn't wait to go home with some medication and wait for her to return to normal.
The first lot of medications worked wonders and she started to run again after just a week on them.
But slowly, the medications stopped working and she began to deteriorate immediately. At one stage, she was having absent seizures hundreds of times a day.
She has tried a lot of different epilepsy medications in the last 3 years, and nothing has helped. We still try her on different medications but some have horrible side effects.
In the Easter of 2014 she had her very first tonic-clonic seizures. My eldest daughter held Olivia on her bed while we were still at home and she said to me how sweet it was that Olivia was cuddling her. I looked at Olivia and realised that she was actually unconscious. Calmly and quickly we rushed Olivia to hospital where on arrival she had another fit. It was the scariest thing I have ever seen. I had no idea that she would turn blue. Fortunately, because we were already at the hospital, they were able to administer emergency medication to bring her round.
The last few years have been a blur. Constant trips to the hospitals, GP's, specialists, therapists and support groups in a relatively short amount of time has been emotionally draining.
The worst part is having to sit back and watch our little girl deteriorate, knowing her outcome, and knowing that there is nothing we can do about it.
Olivia has currently lost her ability to walk, talk or feed herself. She has very little control over any movements and it is getting worse. She is now waiting to have a feeding tube inserted into her stomach as she chokes a lot on even her pureed food.
This disease has taken nearly everything from Olivia. But, throughout it all she is still smiling!
My daughter is the funniest, most caring and loving child you will ever meet.
We do not know how much time Olivia has with us, but while she is still smiling we would like to make the most of it, because tomorrow may be a different story.
I would very much like to spread Olivia's story across the world. If you cannot afford any type of donation, all we ask is that you share her story.
She is a funny, bright shining star in our lives and hearts and we would do anything for her not to lose her smile.
Thank you for spending the time to listen to our story.
Olivia today xx
Olivia has a Progressive Degenerative Neurological disorder called Battens Disease - type CLN6. With no cure, this disorder will eventually claim her short life and will take all of her mental and physical abilities before doing so.
Battens Disease is the most common form of a group of Neurological disorders called Neuronal Ceroid Lipofuscinoses (NCL's).
The sad fact of these diseases is that children like my daughter, lead a perfectly healthy and normal life initially. They develop and learn skills as normal and sometimes in advance for their age. But between the ages of 2-4, it all stops, and then the regression starts. Symptoms such as clumsiness, stumbling, repetitive speech and seizures then start.
http://www.battens.org.au/what-batten-disease
This is Olivia's story:
____________________________________________________________
Olivia was born on 15th January 2008 11 days late and perfectly healthy. Like any other child, Olivia was a fun loving, happy baby and reached all of her milestones as a baby and toddler. Her favourite activities were anything to do outside, in particular soccer, riding her bike and going to the beach.
When she reached the age of around 3 years, we noticed that her speech had not fully developed. She could sing nursery rhymes and ask questions but her sentences were limited to a maximum of 4 words.
A few more months passed like this with no real improvement and she seemed to stop progressing even at school. We then started to notice that she was becoming very clumsy. She would often bump into things or just fall over for no reason. It was then, we saw a Paediatrician who immediately ordered an MRI scan of the brain and spine. Results came back with nothing of concern. We were then referred to a Neurologist. He started testing for lots of things, none of which we had any understanding of.
Any test results taken at that time all came back negative. So a few more months passed and during this period we were in an out of hospital as Olivia began to deteriorate. She could hardly walk or talk and always seemed so tired.
Eventually, Olivia was admitted to Princess Margaret Hospital in Perth for some more testing. The results showed that she was having silent epileptic fits and a great deal of them. We were so relieved to find this out. We couldn't wait to go home with some medication and wait for her to return to normal.
The first lot of medications worked wonders and she started to run again after just a week on them.
But slowly, the medications stopped working and she began to deteriorate immediately. At one stage, she was having absent seizures hundreds of times a day.
She has tried a lot of different epilepsy medications in the last 3 years, and nothing has helped. We still try her on different medications but some have horrible side effects.
In the Easter of 2014 she had her very first tonic-clonic seizures. My eldest daughter held Olivia on her bed while we were still at home and she said to me how sweet it was that Olivia was cuddling her. I looked at Olivia and realised that she was actually unconscious. Calmly and quickly we rushed Olivia to hospital where on arrival she had another fit. It was the scariest thing I have ever seen. I had no idea that she would turn blue. Fortunately, because we were already at the hospital, they were able to administer emergency medication to bring her round.
The last few years have been a blur. Constant trips to the hospitals, GP's, specialists, therapists and support groups in a relatively short amount of time has been emotionally draining.
The worst part is having to sit back and watch our little girl deteriorate, knowing her outcome, and knowing that there is nothing we can do about it.
Olivia has currently lost her ability to walk, talk or feed herself. She has very little control over any movements and it is getting worse. She is now waiting to have a feeding tube inserted into her stomach as she chokes a lot on even her pureed food.
This disease has taken nearly everything from Olivia. But, throughout it all she is still smiling!
My daughter is the funniest, most caring and loving child you will ever meet.
We do not know how much time Olivia has with us, but while she is still smiling we would like to make the most of it, because tomorrow may be a different story.
I would very much like to spread Olivia's story across the world. If you cannot afford any type of donation, all we ask is that you share her story.
She is a funny, bright shining star in our lives and hearts and we would do anything for her not to lose her smile.
Thank you for spending the time to listen to our story.
Olivia today xxOrganizer
Alison Thurston
Organizer
Millbridge WA
