|
So, the walk went pretty well, although Amanda was understandably knackered yesterday...!
You can still sponsor/donate if you want, in fact I think the justgiving page stays active for a couple of months- see my previous entry for the relevant links. Thank you to everyone who already has, and thanks in advance to anyone planning to do so. |
|
Okay, I need to tell you a story. A true story.
You all know who Amanda is, right? She's my fiancee. She works in schools, helping kids with emotional and behavioural difficulties. Three years ago she was working in a secondary school near where we now live, as part of a very tightly-knit team of amazingly supportive people. Among them, Amanda's then manager, Liz Curtis.
When Amanda and I got together, Liz was pregnant, and Amanda was really excited for her, as we all tend to be when our friends are about to become parents- even if, as in Liz's case, it's for the third time. There is something about a new baby that brings out the love in all of us... even me, believe it or not.
As the pregnancy neared it's completion, it became apparent that things weren't quite right. The baby had stopped growing, even though everything else seemed to be normal. As a result, Liz and her doctors took the difficult decision to deliver by caesarean section 5 weeks early. Lily Anna Merrit was born on the 24th of April 2006, weighing 3lbs 8oz, despite being healthy in all other respects.
To start with, her growth was normal- but once she reached 4lbs, that was it. She stoppd growing.
I remember the day Amanda came home from visiting Liz and Lily, shortly after the hosptal decided it was okay for Liz take her daughter home. Amanda's joy at spending time with such a beautiful baby was palpable.
Over the months that followed, Lily suffered seizures, and underwent multiple tests and x-rays.
I don't know how long it took for the doctors to finally work out what was wrong, but the eventual dignosis was Mitochondrial Disease, a genetic problem effecting cell function. It's very rare, and varies widely from person to person in it's symptoms.
And it's incurable.
Lily lived for a year and six days.
(EDIT: Okay, this is embarrassing... as anyone who reads this blog regularly will know, my memory is apalling, and when I typed up this post I had my dates wrong. Lily was born on the 24th of August, not April, and so her life was even shorter than I've said- she was just eight months old when she passed away.)
Mitochondrial disease is, as I said, very rare. research into it's treatment is sorely under-funded, and public knowledge of the disease is shockingly lacking. Following Lily's death, it was obvious to Liz that someone needed to do something about this.
So Liz set up The Lily Foundation. Please click the link and read a little about what they've achieved in the last two years.
Today, May 9th is the day after Amanda's birthday. Do you know what she decided to do for her birthday weekend? Well, as I type this, she's halfway through a 40km walk through the South Downs. The walk is in aid of no specific charity; rather, each particpant is asked to choose their own cause and organise their own sponsorship. Amanda, as you will have guessed by now, is walking in aid of The Lily Foundation.
Please click on over to her Justgiving page and sponsor her if you can. She'll be very grateful, and so will I.
Thank you.
|
|
MINDHACK Chapter 2 Page 7:
(click on the preview panel and by the incredible magical power of the internet you will find yourself transported to the site of true wondrousness where the page is displayed)
|
|
MINDHACK Chapter 2 Page 6 :
Click the pic to do the magic trick
|
|
MINDHACK Chapter two, Page five:
the trick is to click on the pic
|
|
Here you go, everybody, MINDHACK Chapter 2 Page 4:
Make with the clickyt to get to the comic
|
|
MINDHACK Chapter 2, Page 3 (usual drill, click the preview panel to go the site)
|
|
Twitter is awesome. I love twitter. You all know this already. Today, I discovered that one of my "twitter friends" had made this:
Just thought I'd share.
|
|
Mindhack chapter two, page two- click the preview panel to read it-
I'm not very happy with this page, from an artistic standpoint- I dropped Amanda off at the airport yesterday (she's visiting a friend in Israel for a eight days), and then drew this page in the evening. Thing is, drawing is just about the very last thing I wanted to be doing... when Amanda's not home, I tend to lose a lot of focus. I think it shows in this page.
On the other hand, I think the last panel will have a few people extremely confused- in a good way. And I've got two days to get a run up on the next opage and try to bring the standard back up...
|
|
|
![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small}
davidwynne's journal