My sister Jaylene's FIGHT FOR LIFE!
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My Little Sister's Journey
My sister Jaylene is known for her laugh, her positive attitude towards life, her will power and determination, but underneath her smile lies a story of a young girl who has been battling a debilitating illness for 13 years – An invisible Illness that is completely unpredictable.
A LIFE THREATENING ILLNESS THAT WITHOUT TREATMENT - WE WILL LOSE HER!!!
Only in the last 8 months have we FINALLY found answers – Borreliosis (LYME DISEASE) or MSIDS – A Conclusive Diagnosis!
(Multi Systemic Infectious Disease Syndrome). MSIDS is a symptom complex of Lyme Disease and multiple tick borne co-infections. It is a tick bourne infection that can easily go unnoticed, and if left untreated can escalate to the point where all systems in the body become infected. This then creates symptoms that mimic other diseases such as MS, Lupus, Fibromyalgia, Epilepsy, neurological and other psychological conditions.
14 YEARS IS TOO LONG TO LIVE LIKE THIS!
Jaylene had always been a happy and healthy child, so you can imagine the surprise to my parents when she started experiencing bizarre symptoms at 12. At first they were subtle; pins and needles, confusion and unexplained memory loss, but symptoms then increased rapidly. She fell to the floor and had her first convulsive seizure within a few months.
She tried her best to continue her junior years of high school but as her list of symptoms became longer and longer, school became impossible. By 13, Jaylene had started experiencing sleep paralysis and her body had become so weak she was reliant on a wheelchair.
Due to the severity of my sisters condition, she had no choice but to leave school at the start of yr 9 and my mother had no option but to give up her business and become her full time carer. As Jay's seizures developed she started having different types, sometimes she would black out and collapse, she would have both convulsive and absent seizures. Sometimes Jay seems almost healthy, then other days she has symptoms that totally incapacitate her.
For over a decade, our family has searched for someone who could provide an explanation for the pain and suffering that Jay was going through. Jay has had so many symptoms that just finding a doctor that would believe her story was absolutely impossible. The list of specialists that have investigated jays illness over the years is astronomical. We have travelled to seek help from all over NSW, and then had to search further interstate to find help we desperately needed. In 2015, my mother and I took Jay overseas to see specialists in America.
My father and my step-mother, although having their own business, have worked continuously to help maintain the finances for medical costs which has been an enormous strain on them emotionally and financially. Over this time, we have been lucky enough to have such a supportive family, but the financial strain of so many years of investigations, misdiagnosis' and medical bills has pushed our family to its limits.
At some stages, Jay has been completely bed bound and entirely dependant, the only way we have been able to manage her care is with the support of my mother who nurses my sister from day to day. Looking after Jay, she has to be within sight 24/7 and I have seen how this has now completely consumed her life. This has now been going on for 13 years. My Mother has no other family support, other than a brother who we have become very reliant on when Jay's situation has become so overwhelming that mum needs a hand.
As a big sister, I do all that I can to support Jay and my parents but its been really hard to watch Jay not be able to go out and live life as a normal teenager and now years later still not be able to have a normal sibling relationship. It is so difficult to watch my whole family struggling.
My sister has been receiving ongoing treatment under the supervision of specialists in the field of Chronic Illness and Tick Borne Infections. After numerous IV antibiotic treatments, Jaylene and our family have been given hope!
For the first time in such a long time, we are finally seeing an improvement in her symptoms and her quality of life.
For this to be able to continue, we need to complete her current IV and oral medications and then proceed to the next step of her recovery which will be at a treatment facility overseas. The specialised treatments she will need aren’t available in Australia.
Her current treatments cost $3500 per month, this includes travelling to Sydney for IV treatment 2-3 times a week and her daily medications. Jay still has a long road ahead of her and as a family we try and do everything we can to make this easier on her but between IV antibiotics, medication, travel costs and now therapy overseas; including Whole Body Hyperthermia and Ozone Therapy, the financial costs have gone well beyond our limits.
In the short time Jay has been diagnosed and treated for MSIDS, we've discovered the incredible amount of people who suffer from this condition. The strain and financial burden on all of these families are heightened by the fact that the Australian Government doesn't recognise this illness! This means no financial assistance or subsidised aid for any medication and treatments.
Thousands of patients struggle with these symptoms and have been misdiagnosed and mistreated.
They all suffer from the same financial struggles and heartbreak of losing years of their lives to this unrecognised illness.
PLEASE HELP US BAND TOGETHER TO SAVE MY SISTER!
We hope to raise awareness in Australia about this condition via Jaylene's Story
Thank you for considering my sister's campaign!
Any funds raised will be greatly appreciated and used towards Jaylene's Recovery. We would like to donate any remaining funds from the campaign to Lyme Disease Australia to build awareness and treatment options to Australians just like my sister!
Regards,
Jaylenes sister, Jasmyn.
My sister Jaylene is known for her laugh, her positive attitude towards life, her will power and determination, but underneath her smile lies a story of a young girl who has been battling a debilitating illness for 13 years – An invisible Illness that is completely unpredictable.
A LIFE THREATENING ILLNESS THAT WITHOUT TREATMENT - WE WILL LOSE HER!!!
Only in the last 8 months have we FINALLY found answers – Borreliosis (LYME DISEASE) or MSIDS – A Conclusive Diagnosis!
(Multi Systemic Infectious Disease Syndrome). MSIDS is a symptom complex of Lyme Disease and multiple tick borne co-infections. It is a tick bourne infection that can easily go unnoticed, and if left untreated can escalate to the point where all systems in the body become infected. This then creates symptoms that mimic other diseases such as MS, Lupus, Fibromyalgia, Epilepsy, neurological and other psychological conditions.
14 YEARS IS TOO LONG TO LIVE LIKE THIS!
Jaylene had always been a happy and healthy child, so you can imagine the surprise to my parents when she started experiencing bizarre symptoms at 12. At first they were subtle; pins and needles, confusion and unexplained memory loss, but symptoms then increased rapidly. She fell to the floor and had her first convulsive seizure within a few months.
She tried her best to continue her junior years of high school but as her list of symptoms became longer and longer, school became impossible. By 13, Jaylene had started experiencing sleep paralysis and her body had become so weak she was reliant on a wheelchair.
Due to the severity of my sisters condition, she had no choice but to leave school at the start of yr 9 and my mother had no option but to give up her business and become her full time carer. As Jay's seizures developed she started having different types, sometimes she would black out and collapse, she would have both convulsive and absent seizures. Sometimes Jay seems almost healthy, then other days she has symptoms that totally incapacitate her.
For over a decade, our family has searched for someone who could provide an explanation for the pain and suffering that Jay was going through. Jay has had so many symptoms that just finding a doctor that would believe her story was absolutely impossible. The list of specialists that have investigated jays illness over the years is astronomical. We have travelled to seek help from all over NSW, and then had to search further interstate to find help we desperately needed. In 2015, my mother and I took Jay overseas to see specialists in America.
My father and my step-mother, although having their own business, have worked continuously to help maintain the finances for medical costs which has been an enormous strain on them emotionally and financially. Over this time, we have been lucky enough to have such a supportive family, but the financial strain of so many years of investigations, misdiagnosis' and medical bills has pushed our family to its limits.
At some stages, Jay has been completely bed bound and entirely dependant, the only way we have been able to manage her care is with the support of my mother who nurses my sister from day to day. Looking after Jay, she has to be within sight 24/7 and I have seen how this has now completely consumed her life. This has now been going on for 13 years. My Mother has no other family support, other than a brother who we have become very reliant on when Jay's situation has become so overwhelming that mum needs a hand.
As a big sister, I do all that I can to support Jay and my parents but its been really hard to watch Jay not be able to go out and live life as a normal teenager and now years later still not be able to have a normal sibling relationship. It is so difficult to watch my whole family struggling.
My sister has been receiving ongoing treatment under the supervision of specialists in the field of Chronic Illness and Tick Borne Infections. After numerous IV antibiotic treatments, Jaylene and our family have been given hope!
For the first time in such a long time, we are finally seeing an improvement in her symptoms and her quality of life.
For this to be able to continue, we need to complete her current IV and oral medications and then proceed to the next step of her recovery which will be at a treatment facility overseas. The specialised treatments she will need aren’t available in Australia.
Her current treatments cost $3500 per month, this includes travelling to Sydney for IV treatment 2-3 times a week and her daily medications. Jay still has a long road ahead of her and as a family we try and do everything we can to make this easier on her but between IV antibiotics, medication, travel costs and now therapy overseas; including Whole Body Hyperthermia and Ozone Therapy, the financial costs have gone well beyond our limits.
In the short time Jay has been diagnosed and treated for MSIDS, we've discovered the incredible amount of people who suffer from this condition. The strain and financial burden on all of these families are heightened by the fact that the Australian Government doesn't recognise this illness! This means no financial assistance or subsidised aid for any medication and treatments.
Thousands of patients struggle with these symptoms and have been misdiagnosed and mistreated.
They all suffer from the same financial struggles and heartbreak of losing years of their lives to this unrecognised illness.
PLEASE HELP US BAND TOGETHER TO SAVE MY SISTER!
We hope to raise awareness in Australia about this condition via Jaylene's Story
Thank you for considering my sister's campaign!
Any funds raised will be greatly appreciated and used towards Jaylene's Recovery. We would like to donate any remaining funds from the campaign to Lyme Disease Australia to build awareness and treatment options to Australians just like my sister!
Regards,
Jaylenes sister, Jasmyn.
Organiser
Jaz Brackenrig Reynolds
Organiser
Bathurst, NSW