28th March 2012, this is the day that changed our lives forever. Having been unwell for such a while, I remember thinking ‘maybe this time, maybe they will have an answer’. The answer was possible MSA, we had no knowledge of MSA and we did the worlds worst thing…went home and googled it.
Then it changed to probable MSA … Now they just say MSA.
The words are said in long medical talk and without having a degree in neurology, you only hear PROGRESSIVE, FATAL and TERMINAL.
When I was told, I remember thinking breathe Sam, take a breath, shock, disbelief and sorrow hit me all at the same time.
MSA normally affects older people, which then made me think why? I was 37 years old, I have the most amazing family, not perfect but funny, loving, sincere and always there for each other. Andy and I waited till we were bit more ready to tell our parents, I cannot describe to you the pain I felt/feel every single time about those conversations.
Telling my daughter is without a doubt the hardest thing I have ever done in my life, she is 16 but already fought her own battles, born at 25 weeks and weighing 1lb 11ounces. She is a fighter but she is also my baby girl, my job is to protect her for harm, she’s my reason for breathing. I have never felt so helpless EVER, I was breaking my babies heart and with that, mine too. I would never hurt her, I’ve never broken a promise to her, so imagine when she asked me to promise it was going to be ok. I could only promise her I will never give up and we will stay strong as a family.
5-7 years isn’t a longtime but I know Andy will be there forever and I will right beside Andy and my daughter every step of the way, diagnosed with MSA has destroyed so much of what my family had but it will not beat us and only bring us closer together.
To the disease which is known as MSA,
Two days ago you took a piece of my heart, my mum and andy sat me down and explained that mum had MSA … what is MSA? I know now but on the 26th June I had never heard of it.
I dont really know why i am writing to you, maybe because I am so angry with you, my mum is 37 years old and because of you she is going to die. She taught me to read and write, she gave me my love of reading, she read to me every night, we have sang and danced and had laughed till we cried. She taught me that no matter how many times you fall, you get back up. My mum is my best friend, she makes me smile when I think of her and you are taking that from us.
MULTIPLE SYSTEM ATROPHY, three words that needs more awareness and needs a cure.
I wish I understood why you picked my mum and I hate it when people say to me that god doesn’t put more on your shoulders than you can cope with, WHAT!!
My mum has given me the greatest gift, love and I know that even when MSA beats her she will still be smiling.
I cannot imagine my life without my mum and I cant think that far into the future.
I have been brought up never to hate, but I hate you, I hate what you are doing to my mum and I hate what you are doing to my family. This is my promise to you MSA, I will never give up raising awareness, trying to find a cure and helping other people who are sadly diagnosed with you!