In 2012 my amazing Mum was diagnosed with Cerebellar Ataxia. An illness that has plagued her family and unfortunately she inherited the gene. You would think receiving the diagnoses would be a relief after noticing her deteriorating health but it hit us all hard. As time went by we all managed to cope, and she never ever let a thing get her down. Despite slowly losing her abilities she never stopped laughing and smiling. Then a year ago our worlds came crashing down.
November 2016 I noticed her behaviours completely changed, it was like somebody crawled into her head and turned the lights out. She was unable to stand for long/walk. She got confused when dressing herself so I had to change her and she was unable to co-ordinate a knife and fork to feed herself. Petrified that something else, aside from her already debilitating neurological condition, had happened to her I phoned an ambulance and she was taken into hospital. The doctors had no idea what happened, we were all confused, and no one could tell us what went so wrong so quickly. She should have lived so many more years before losing all abilities but it was as if overnight time sped up and that was it, there was no going back. We were then told that even contracting an infection could have triggered the onset of her symptoms and sped them up, but what really went on no one really knows.
3/4 months later We were so relieved to be told that she could come home but little did we know the challenges that lay ahead. She is unable to communicate with us so if she is uncomfortable or in pain its hard for us to know, but we can see through her emotions, either smiling or crying ect. She cannot walk, stand or straighten her legs due to her muscles contracting and she cannot co ordinate her arms to reach out to give us a hug back when we hug her :( ... She has never been unable to hold her youngest grandchild. She is unable to feed herself and due to the complexities of all this, my amazing Dad quit his job to become her full time carer. He does absolutely everything! I cannot tell you enough how incredible he really is. I come home more or less everyday as well to help and support in anyway I can.
The reason I am trying to raise money is because at the moment my Mum is living in their front room. She has her bed in there, her special chair and a hoist which is used to move her from bed to chair and back again. My parents were awarded a grant from the council and planning permission and are being built a single story extension so that my Mum gets her own room & wet room (bathroom) which will be incredible for her to have her own space. However it looks out onto their back garden which is really in need of work. My dad is working so hard to save every penny he gets to do the garden so that once the building work is complete, it can be a nice place for my Mum to sit in when in her wheelchair or even just to look out on when she is in her room. Her own little Haven. My dad talks about taking her out just to walk in the garden, to hear the birds sing or for her to watch him cut the grass. Its the simple things in life that she doesnt even get to enjoy right now.
My dream would be to help raise some money to go towards fixing the garden. Their whole lives they have worked so hard, provided everything without no help from anyone and all I want to do is give back. I couldnt imagine anything better for this christmas then to say “Dad, this is from everybody to help make your dream come true.”
However I would like to keep this a suprise so If anyone reading this or is kind enough to donate knows my Dad or any of my family, please keep this a secret, and I will film his reaction on Christmas Day.
Cerebellar Ataxia took everything away from my Mum, but as a family all we want to do is make the most of what she has left, knowing deep down its a progressive illness with no known cure.
More information can be found online.
Thank you so SO much! ❤️
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