Saturday, 4 February 2012

Aila's Fund

Photo: Robert Bousfield
Most of our work as a pro-life group in the parish is awareness raising, encouraging our fellow Catholics to read up, speak and pray about the beauty and dignity of each and every human life from the moment of conception. But a natural part of our work is also fundraising for various events and causes; we had the White Flower Appeal last weekend in aid of SPUC, through cake stalls over the past year and a half we've raised funds to restore the Memorial to the Unborn Child in Hills Cemetery, things like that. But this time we're doing something slightly different, instead of collecting money for an organisation or a place we are helping someone a little closer to home.

One of our group members, Anneli, has a daughter with a neurological disorder known as Friedreich's Ataxia which was diagnosed a couple of years ago. Out of nowhere Aila was faced with the sudden, shocking news that as she got older her life would not follow the same pattern as other girls, that this condition would affect her balance, her speech, eventually result in her needing to use a wheelchair. This is difficult, frightening stuff for anyone to hear, let alone a teenager. And, along side the physical and psychological struggles that come with such a diagnosis (and I'm not trying to play them down by the way, but those are not my details to impart - you can read Anneli's take in an earlier post), part of what makes adapting to such a condition so difficult in our modern society is the fear of not being 'normal'. If you ask most of us precisely what a 'normal person' is we will promptly say that there is no such thing, that the 'average Joe' is totally false and that, of course, everyone is unique. This is, most definitely, true and we mean it when we say it, but this notion of a normal person still endures and has a strong hold in the minds of many of us ...well to be more exact the idea of what is not normal does.

Aila has had a lot of adjustments to make over the past couple of years and will have even more to make in the future. Because her mobility and balance are gradually decreasing (she is already having to use a wheelchair if walking for more than a very short distance is required and cannot manage any distance outside by herself without holding someone's arm), it is vitally important that we as a group and as a parish help her to move forward, to do this as smoothly as possible. One very obvious consideration in all this is that her bedroom and the toilet in her house are upstairs and it is very impractical, very difficult and potentially dangerous for her to be tackling the staircase several times a day. What she and her family want to do is have their house extended to create a downstairs bedroom and bathroom just for her. (Not an unreasonable request I'm sure you'll agree.) The council have agreed to fund the greater part of this but there is an excess of around £16,000 which her family will have to provide, and provide quickly. To help them do this we have started "Aila's Fund", a dedicated series of fund raising events to help pay for this extension. We have all sorts planned; cake sales (everybody likes cake), concerts, sponsored cycles, photo shoots and goodness knows what else we'll come up with. But rest assured all of the donations we receive will go straight to paying for the work to be done and, after that, for an overseas holiday for Aila too. Anything left over at the end will be donated to Ataxia UK for the work they do in working with people like Aila and in the research they carry out. 

Here's the list of what we have planned so far;

* Sunday, 19th February - Cake sale in St. John's RC church hall, 3 Springfield Road, Horsham, West Sussex after 9am Mass (i.e. about 10am)
* Saturday, 24th March - Photo shoot for families and individuals in rooms 2/3 in St. John's hall as above (by appointment: details to follow)
* A friend is making a sponsored cycle ride from London to John O'Groats (date TBC)
* More events are also in the pipeline and we'll keep you posted!

So please do come along to all of the events in the next few months and support Aila, she may be too shy to tell you herself but she really is very grateful.


  1. Thank you Katherine. Aila, her father and I and her two brothers would like to say a big thanks to all those who have already shown us such kindness, support and help, both practically and in terms of friendship and prayers. It means more than we can say.

  2. Happy to contribute to any concert that's organised ...

    Fr T

  3. A concert, now there's a good idea! Thank you very much Fr T... it's a while since we've heard your fab flute playing and we miss it :)

  4. Thanks Fr Terry! We'll be asking you later to help with publicity too via your blog, twitter & FB page if that's ok?

  5. What a great idea :) I'm happy to help in any way I can. I can't play anything but I can collect tickets etc

  6. Amanda, do you think Helen would be up for playing a piece too?

  7. Well sure, but our children are only grade 4 piano & H is grade 0 flute...
    Roy & Louise talked about a music night, perhaps that could incorporate some other musician friends??
    And your bassoon!?

  8. Before confirming/pondering any dates it's IMPERATIVE that Bernard S is around to accompany etc. he's quite marvellous.

  9. There is always Jeremy if he is around . He doesn't need a grand piano,he also has friends in the area. I will ask him but we will have to have a date in the future . He is playing in Asia March/april i will ask dates. Any group singing i will be theere and help with.

  10. Thanks on all counts Stella! We were hoping Jeremy might be able to come - date now fixed so I've dropped you an email.

    1. Have left an urgent message on Jeremy's phone ,I am sure he will be in touch as soon as he is able . At this point we just cross our fingers and pray Stella