Scarlett

I'm sure most people reading this won't recall my monthly round up of June last year in which I posted a picture of a little pink cardigan I'd knitted for a new baby in the family of a good friend of mine. The baby girl, born on 22nd May last year is named Scarlett; here she is on the day she was born.

Scarlett Isabella Kay is a stunningly beautiful little girl, and whilst she was always going to be special, she has turned out to be special in ways which her family can never have anticipated.

Scarlett and her family

When she was a few months old, Scarlett's parents noticed that she was experiencing seizures of some sort, so she was admitted to hospital for observation and tests. She was in and out of hospital for a while, but admitted pretty much full time in October of last year - at just 5 months old. Her local hospital (in Scotland) transferred her to The Royal Hospital for Sick Children in Edinburgh, where she was diagnosed in December 2009 with a condition named Migrating Partial Epilepsy in Infancy (also known as MPE).

This is an extremely rare form of epilepsy, identified and named just 15 years ago, and which is known to affect only 50 children worldwide. It begins with the affected child (at only a few weeks old) experiencing mild seizures, but those seizures typically become more frequent, with some sufferers having up to 50 seizures a day ... every single day. At the time of writing this post, no effective treatment has been found for this form of epilepsy, and since it affects relatively few, there is not a huge likelihood that extensive research into the condition will receive funding.

Earlier this year, Scarlett was moved from hospital in Edinburgh, to the Sunndach Centre - a place which cares for children with severe disabilities, and who need high levels of medical care and attention. By all accounts Sunndach (the word is Gaelic, and means 'cheerful') is a wonderful place, and is much closer to the home of Scarlett's family than was the case with the hospital (which they had to try to reach during all that appalling weather in the winter just gone). But what Scarlett's family would really like to do is to be able to bring her home. She will celebrate her first birthay in a couple of weeks, but has spent most of that first year in hospital.

To bring her home sounds quite simple, but is far from that. She needs round-the-clock care, and the special equipment that needs to be bought so Scarlett will be both comfortable and safe at home, is expensive. A major fundraising drive is therefore in place. Should they manage to exceed their target, any 'extra' money will be donated by the family: Half back to Sunndach to help the staff there in their support of other children and their families; and the other half to Rachel House - Scotland's first hospice dedicated specifically to children and their families.

I have never written a blog post like this before, but then I've never been personally affected like this before, by a situation like the one facing Scarlett and those who love her. This post has been written with the full consent of her family. I plan to publish details of events which the family and others stage, to raise funds for their cause. The first of those takes place on Saturday, 19th June 2010: A cycle ride from Edinburgh to St Andrews. The ride will be leaving the centre of Edinburgh at 8.45am and will follow a well-planned route to the Forth Road Bridge. The cyclists will then ride over the Cleish Hills and through Fife's country, north to St Andrew's; the whole route totals 67 miles. Should any of you wish to take part, or know someone else who might like to take part, you can contact the organisers on lynsey@almond-valley.co.uk.

The next 'big' fundraising event, will be on Saturday, 18th September 2010, when there is to be a climb of Ben Nevis, near Fort William in Scotland. Just as before, if anyone would like to take part, or knows someone else who might like to take part, please contact the organisers via lynsey@almond-valley.co.uk. If you wish to donate to the fund, you can do so via this link - that page belongs to Hollie Kay - Scarlett's Aunt - who is planning to do both the cycle ride, and the Ben Nevis climb. If any of you have a Facebook account, and would like to 'friend' Scarlett to be kept abreast of all fundraising information, you can find her profile here. It is an account set up specifically for the purpose of helping to publicise fundraising efforts.

The prognosis of children with MPE is not good. If you can help the family be able to have Scarlett at home for some of whatever life she has ahead of her, I know they would be extremely grateful. Or if you can think of ways they can raise funds to help her, that too would be good. Thank you.

Kind of puts everything else into perspective, doesn't it?

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