Katherine is my special, disabled friend and she has one wish, which I want to help make come true for her. She is slowly deteriorating from a terrible degenerative disease called Spinal Muscular Atrophy Type 1. Her condition will never get better and there is no cure.
Katherine used to be able to paint and write, but as her condition has worsened, she’s losing more and more ability to be able to do things. Katherine used to be able to apply her own makeup but she hasn’t been able to do this in a long time (she tells me how to do it and I do it as best I can!). Katherine speaks very softly because she is so weak, and can barely be heard in a crowded room. I really enjoy helping Katherine to communicate to her friends and family.
Recently, Katherine was able to use her computer for the first time in many years, thanks to some assistive technology, which allows her to move the cursor with a reflective dot, stuck onto her lip. This has opened up Katherine’s life, giving back some of the independence that she has lost over the years.
Despite Katherine’s complex health needs, she is still in high spirits. She is fully dependent on ventilation throughout the night and needs around-the-clock care from a team of dedicated carers. Katherine loves eating but sadly her swallowing has also deteriorated. I love the challenge of making her special meals, which I prepare and puree because she needs her food to be soft, like baby food.
Every day is a struggle for Katherine because her body has become so weak that getting up and doing the very basics that you or I take for granted is a challenge she must daily overcome. Her team of care-givers do everything they can to make her comfortable and happy, but her illness is so severe that there is nothing that Katherine can do on her own. My aim is to make Katherine’s wish come true and help her to realise her dream, with a little support from you.
As Katherine’s condition deteriorates, her greatest wish is to sing a song about her life, as someone with SMA, and how she copes every day. She wants others to know how SMA affects people and she wants to encourage and inspire other SMA sufferers and supporters by sharing her incredible story. As her condition worsens, so her independence is becoming more compromised and difficult. Howver in all the time I’ve known Katherine, I have never heard her complain once.
This is why I find Katherine so inspiring, because she makes me feel grateful for everything I have. When I look at her, my own problems seem to disappear and I tell myself that there are people who are far worse off than I could ever be.
I am hoping to raise at least £4,000 for Katherine’s wish to come true. She is an inspiring, incredible individual and through your generous donations, she is hoping to make her own music video, in which she will sing an uplifting song that will inspire others and give us all hope. I am hoping to raise the funds as quickly as possible, while Katherine is in good health, which could change very rapidly.
The funds will be used to make her wish come true - to produce a professionally shot video, in which Katherine actually sings an original song, using her own voice. Katherine is already in training as she is so excited about this one in a lifetime dream. The cost of making this happen involves hiring professional filmmakers, a composer and of course, drivers, special transport and assistants, who are relied upon by Katherine to do everything.
Through her music video, she is hoping to create awareness around SMA and help others to understand the day to day difficulties it brings. The video will be available to all on YouTube once funding has been raised and the video has been made.
I know first-hand how difficult Katherine’s life is and I want other sufferers to know if they have enough determination (like Katherine does) they too can inspire others and overcome, against all odds and do wonderful things.
Thank you so much for taking the time to read this and I hope that we can make this happen for Katherine! Any donations, large and small would be amazing and your generosity will be truly and deeply appreciated. Together we can make dreams come true.
Laura Dee Milnes, Katherine’s helper, and her friend