For my mother, Margaret Bailey (1961-2012), Moebius Syndrome expressed itself most notably as an inability to completely close her eyelids or her mouth, even after a surgery that thinned the width of her mouth to alleviate some of the difficulties she experiences with eating and drinking. To adapt, my mother had to wear a sleeping mask over her eyes, because she could not completely block out light. Whenever she ate or drank, she would keep a hand free to press her lips shut so she could swallow without dropping anything. There are many other little adaptations she used day to day, but those two stand out both in my memory and in how much they effected her ability to perform mundane tasks.

As a personal aside, as I recount this, it's a little strange for me to think of these activities as 'unusual', simply because it's what I grew up with. I never really realized that my mother had any form of disability. She had difficulty smiling or frowning, but I could recognize when she was without any difficulty, because I wasn't accustomed to anything else. Truthfully, I never even knew that what she had was called Moebius Syndrome until she passed, and my father raised the idea of making a donation to the Foundation in her name.

I've been told by my mother, my father, and several of my maternal aunts, that growing up with Moebius Syndrome was very hard. My mother's side of the family comes from Ireland, and she spent the first twenty years of her life being bullied and ridiculed for her appearance; not only by her peers at school, but also by several members of her family. She was the youngest of nine siblings (seven sisters and two brothers) and only the eldest, my Aunt Mary (Melicka McLintock), would stick up for her. Because of her poor relations with her family, she was the first of her family to move to England, but even away from Ireland and her family she still had suffered irreparable damage to her self esteem.

    Eventually, things would improve for her, when she met my father (David Bonneywell) and they became an item. But her Moebius Syndrome still left her with several fears for the future, and what she feared the most was that she would pass it on to her children. My father spent a lot of time reassuring her, and eventually they did have a child in 1996 (Hello!) and she was very relieved that I was born without any signs of Moebius Syndrome. She didn't, however, want to risk having any more children; both due to her lingering fears and her age.

When she passed, it was sudden, in a sense. She had been feeling unwell, and was losing weight along with being unnaturally exhausted much of the time. We took her to the hospital, and a few days later she was diagnosed with bowel cancer. Here, I feel the need to apologise, because without reaching out to my father and to Dudley, I don't actually remember a lot of the specific diagnoses or dates. After her diagnosis, we mustered up as much hope and optimism as possible. It was 2012, cancer was still very dangerous but it wasn't unstoppable, and my mother was a stubborn, ironclad woman. A week later we were told the diagnosis was terminal, as it had already spread to several different organs long before she had experienced any symptoms. We had simply caught it too late. She spent some time at home, perhaps a few days, before she was back in hospital for good. She was soon transferred from High Wycombe to Stoke Mandeville hospital, and died shortly after. To our great regret, my father and I had been visiting her earlier that day, and when we recieved a call that she probably wouldn't make it through the night, we arrived too late. We take comfort that the nurses of the night shift were with her, as she was a care nurse herself.

All told, from diagnosis to her death was perhaps a month. I don't recall the exact date, largely because I refuse to remember it, but I know Dudley remembers. It was around mid to late Autumn, the start of the school year, as I remember having just started at Uxbridge College.

    Because I don't like to dwell on the date of her death, I've always endeavoured to do something on her birthday (May 14th). Some years this has simply been a dinner with my father where we make one of her signature dishes, and in more recent years has often involved my inviting a number of friends round to watch some of her favourite films and perform a toast. This year, given that it is a significant anniversary, I wanted to make a donation to the Foundation. This may sound a little callous put into words, but despite the fact that my mother died of cancer, my father and I never felt the desire to donate to any cancer research charities over the Moebius Syndrome Foundation. When we talked to each other about this ten years ago, we came to the realization that we felt the Foundation - and, by extension, Moebius Syndrome - was a much lesser known entity.

   Many people like myself have lost friends, relatives, and loved ones to cancer, and many cancer research charities have the manpower and funding to perform drives and events. Moebius Syndrome, however, is rare enough that I would very much doubt that anyone I've met would know what it was if it hadn't come up in discussions about my mother. Donating to the Moebius Syndrome Foundation felt a lot more personal than donating to any cancer research charity, although I would like to take the time to acknowledge Macmillan Cancer Support for everything they did to help my mother in the all-to-brief time between her diagnosis and her passing.

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