| I Know I've Not Been Around Much Here, But PLEASE Read This Post. |
 I Know I've Not Been Around Much Here, But PLEASE Read This Post.
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9th May, 2009 @ 12:29 
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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.
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| From: | (Anonymous) |
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| Date: |
9th May 2009 17:48 (UTC) |
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Bless you.
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(Link) |
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I love how much you love Amanda. You are both so lucky to have each other.
Amanda is a wonderful woman and you are so lovely.
Hugs, Hazel. xxx
![[User Picture Icon]](http://l-userpic.livejournal.com/70705292/14337707) |
| From: | ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) cmcmck |
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| Date: |
11th May 2009 18:35 (UTC) |
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(Link) |
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This is awesome of Amanda, David and what a lovely place to do a sponsored walk! :o)
I worked with terminally ill kids for almost twenty years as a special needs teacher/Head of department so I know something of how this can feel.
I'm not comfortable with online donation but if you can give me a contact back channel, I'll pop something in the post!
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