MS is a neurodegenerative disease that attacks the brain and spinal cord, causing lesions and nerve damage, which ultimately affects the person’s balance, mobility, and normal bodily functions. Unfortunately, my mum is not the only person in her family that has had to fight this debilitating disease. Her cousin was the first to be diagnosed and lost her brave battle in March 2015. Her older brother was diagnosed when he was only 21 and he too fought a long brave battle but passed away from complications in January 2018. My mum’s eldest sister started to notice signs of MS at the age of 33 and has been in a wheel-chair for the past 14 yrs and is continuing her fight every day.
Unlike some others with MS, Mum has been lucky enough to have 6 healthy children (2 boys and 4 girls). Our mother remains our motivation to work hard every day, we know if she can do it, so can we. She is always working to find new treatments to help stop the diseases progression and in her words, ‘keep me on my feet’. As my brothers and sisters have moved out of home, she have collected 5 miniature Dachshunds that keep her busy every day and help maintain the happiness in her life.
Since the age of 5, mum was teaching me how to prepare and administer her daily injections, only promoting my passion for nursing. In the past, mum has taken part in many treatments; Betaferon, Kepaxone and Lemtrada, just to name a few. She (and I) have jabbed her with injections every day for many years, but unfortunately none of these treatments have made any huge difference in her disease’s progression. It is incredibly difficult to watch MS constantly beating her down.
A couple of months ago when in a nursing lecture in Brisbane, I received a call from Mum informing me she had had another fall. After being knocked out cold for an unknown amount of time, she woke up to our dachshunds all incredibly worried around her. After mum being in denial that anything was wrong (yot net being able to move much) I finally convinced her to go to the doctors and yet again she broke a couple of ribs and a bone in her hand. After each fall or set back she never seems to come back to the state that she was in before it, this is really hard for us as her children to just sit and watch.
Mum is currently self-employed; although, she is finding the severity of her MS is having a huge impact on the longevity of her working abilities. Mum requires a chemotherapy treatment that is not currently offered for people with Secondary Progressive MS in Australia. This treatment is currently the last option available for mum, and she has already been accepted to receive it. In a last-ditch effort, I have contacted the ‘National Pirogov Medical Surgical Centre’ in Russia to meet Dr. Denis Fedorenko to do the hematopoietic stem cell transplantation (HSCT). HSCT has been established as one of the most promising therapeutic options for people with multiple sclerosis and other autoimmune diseases. This treatment has a 70-80% chance of stabilising and improving a patient with Secondary Progressive MS. Although, it does come with a high cost of $80,000 which includes the cost of return flights for a carer (myself) and Mum to Russia.
I am asking for your help. I feel that this treatment is mums get out of jail free card, her final chance to beat this debilitating disease that has taken so much from her and us as children already. Mum has signed up for this treatment to begin in January of 2020 and we need these funds before we leave. So please help us save our mum.
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