Our Mum's MS Journey to Russia
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This is our Mum’s MS story
Our beautiful Mum used to be an outgoing, self-driven and independent woman, however the past 4 years have significantly changed every aspect of her life. She would do anything for us, and our dad, and we feel as though this is our opportunity to try and help her, like she has done for us so many times over the years.
On Australia day 2013 she woke up with numbness all down the left side of her body, believing she had a stroke, she went to the local GP who then sent her to the hospital where the nurse on duty had her suspicions that mum had MS and booked her in for an MRI. By March 2013, at the age of 48, she had a confirmed diagnosis of Multiple Sclerosis (MS) and thought her world had ended. In brief MS is an auto-immune disease that attacks the Central Nervous System and destroys the protective coating on the nerves and therefore the signals cannot pass along the nerves properly. It can affect all parts of your body making them not be able to function properly.
With the support of her family and friends she commenced on MS medication of an injectable three times weekly, this seemed to keep her MS at bay and life continued fairly normally with only slight symptoms but in December 2016 she was slowly finding it harder to walk on her right leg and it got weaker and weaker and this weakness progressed up her arm and into her right hand. She also suffers daily with pain in her legs and arms, stiffness, fatigue both mentally and physically, balance and walking issues. So, in October 2017 her Neurologist changed her medication to a daily tablet in a hope to try and slow the progression of the disease, this is yet to provide any improvement in her condition.
Currently she finds it difficult to accomplish day to day activities deemed normal by most people
One of the hardest things to cope with is the unknown of what lies ahead daily with this disease and if not stopped sooner than later the thought that she could lose function of both legs and arms and possibly be in a wheelchair is extremely difficult for her and our family to comprehend.
It is not good enough that the medications that are available in Australia just slow down the progression of this disease when there is a treatment available overseas that has a very high success rate of halting the disease for good, this is called Hematopoietic Stem Cell Transplant (HSCT).
HSCT is a highly successful treatment that stops MS. It involves having your stem cells extracted and put on ice while you have four days of high intensity chemotherapy. This will remove existing immune cells readying the body to have the stem cells transplanted back into the body. Once the stem cells are transplanted back, the body will then regenerate a new immune system, resetting it and stopping the body attacking the central nervous system and halting the MS.
And so, she has applied and been accepted in August 2018 into the HSCT program in Russia in a bid to stop her MS in its tracks. This is a 4-5 week treatment and comes at a hefty price of $80,000 AUS which includes the costs of full treatment, flights, accommodation and recovery costs on her return to Australia.
Our mum is not a person who usually asks for anything, however she strongly believes that this is her best shot at stopping this dreadful disease before too much more damage is done to her body. This is the last resort to prevent our mum’s health from deteriorating further and will give her a significantly better quality of life.
If anyone can help in anyway no matter how small it would be greatly appreciated, we cannot wait to see what the future holds for her!
Our beautiful Mum used to be an outgoing, self-driven and independent woman, however the past 4 years have significantly changed every aspect of her life. She would do anything for us, and our dad, and we feel as though this is our opportunity to try and help her, like she has done for us so many times over the years.
On Australia day 2013 she woke up with numbness all down the left side of her body, believing she had a stroke, she went to the local GP who then sent her to the hospital where the nurse on duty had her suspicions that mum had MS and booked her in for an MRI. By March 2013, at the age of 48, she had a confirmed diagnosis of Multiple Sclerosis (MS) and thought her world had ended. In brief MS is an auto-immune disease that attacks the Central Nervous System and destroys the protective coating on the nerves and therefore the signals cannot pass along the nerves properly. It can affect all parts of your body making them not be able to function properly.
With the support of her family and friends she commenced on MS medication of an injectable three times weekly, this seemed to keep her MS at bay and life continued fairly normally with only slight symptoms but in December 2016 she was slowly finding it harder to walk on her right leg and it got weaker and weaker and this weakness progressed up her arm and into her right hand. She also suffers daily with pain in her legs and arms, stiffness, fatigue both mentally and physically, balance and walking issues. So, in October 2017 her Neurologist changed her medication to a daily tablet in a hope to try and slow the progression of the disease, this is yet to provide any improvement in her condition.
Currently she finds it difficult to accomplish day to day activities deemed normal by most people
One of the hardest things to cope with is the unknown of what lies ahead daily with this disease and if not stopped sooner than later the thought that she could lose function of both legs and arms and possibly be in a wheelchair is extremely difficult for her and our family to comprehend.
It is not good enough that the medications that are available in Australia just slow down the progression of this disease when there is a treatment available overseas that has a very high success rate of halting the disease for good, this is called Hematopoietic Stem Cell Transplant (HSCT).
HSCT is a highly successful treatment that stops MS. It involves having your stem cells extracted and put on ice while you have four days of high intensity chemotherapy. This will remove existing immune cells readying the body to have the stem cells transplanted back into the body. Once the stem cells are transplanted back, the body will then regenerate a new immune system, resetting it and stopping the body attacking the central nervous system and halting the MS.
And so, she has applied and been accepted in August 2018 into the HSCT program in Russia in a bid to stop her MS in its tracks. This is a 4-5 week treatment and comes at a hefty price of $80,000 AUS which includes the costs of full treatment, flights, accommodation and recovery costs on her return to Australia.
Our mum is not a person who usually asks for anything, however she strongly believes that this is her best shot at stopping this dreadful disease before too much more damage is done to her body. This is the last resort to prevent our mum’s health from deteriorating further and will give her a significantly better quality of life.
If anyone can help in anyway no matter how small it would be greatly appreciated, we cannot wait to see what the future holds for her!
Organizer
Tara Edgley
Organizer
Edithvale VIC
