* In training: Charlie Reoch.
* Lilly Day, nine.
A
bakery worker from Llangollen has been inspired to embark on a series of
fund-raising challenges by her nine year old cousin who suffers from a rare
life-limiting condition.
Her
brave little cousin, Lilly Day, who lives in Deal, in East Kent, is one of
fewer than 30 people in the world who have been diagnosed an uncommon variant
of the already rare condition, Ataxia-Telangiectasia or A-T.
It’s
a degenerative multi-system disorder that affects the brain, immune system and
increases the risk of cancers.
The
cruel condition causes increasingly severe disability for which there is no cure or treatment.
Charlie,
who joined the Village Bakery nine months ago, is in training for the popular
race which will be her first ever half marathon.
It’s
attracting a record number of runners, with more than 2,700 signed up already
and just a few places left.
As
well as sponsoring the event, this year the Village Bakery is also providing
the race headquarters at their new gluten-free bakery on Wrexham Industrial
Estate.
After
the half marathon, Charlie is looking for ideas for more fund-raising physical
challenges.
The
proceeds will be split equally between the A-T Society and Lilly’s family so
they can go on a holiday of a lifetime touring Europe in a camper van.
Charlie
said: “It is a very cruel condition and sadly Lilly will die young. She won't
make it to her 20s - she'll make it through her teens if we're lucky.
“Lilly
is losing the ability to walk, she can't talk and she can't chew food properly.
It's horrible. It gets progressively worse.
“But
she'll stay compos mentis mentally, so she'll know what's happening, but her
body will fail her.
“She's
of an age now where she is starting to understand more. She used to say to her
dad ‘Daddy next year when I'm better, can we do this and that?’. They had to
sit her down and say ‘this is the best you're going to be’.
"But
she's a very positive young girl and she's quite energetic and excited. She's
gorgeous. She's cheeky. She's ever so funny. She's full of life, a really happy
little girl. She loves playing and baking and doing everything else when she
can.
“The
fact she has A-AT is terribly sad. It's heart-breaking.
"Half
the money I raise will go to the AT Society who fund research into treatment
and hopefully a cure. They've given great support and my family during this
awful time.
“The
rest of the money I would like to give directly to the Day family because,
while Lilly can still move and enjoy life, they want to take her on the road
trip of a lifetime this summer.
“She's
got an older sister, Melissa, and an older brother, Hayden, so they want to go
and make memories while they still can.
"Lily
is inspiring me to do this now. I don't have a plan for the other challenges
but I’d welcome suggestions from people for what they'd like to see me do.
"I used to run about two years ago but this will
be my first half marathon. I am in training now, the farthest I have run so far
is 8k.
“If it didn't have a time limit I'd be fine but you've
got to do it in 2 hours 45 minutes, so there is just a little bit of
pressure then. I need to finish. I hope it will be fine.
Village
Bakery managing director Robin Jones said: “I take off my hat to Charlie
because this will be her very first half marathon but she’s doing it for
a very good cause.
“This
year’s race is shaping up to be the best ever and they have already got a
record number of runners taking part.
"”We're
now in our 24th year and we hope and pray that the weather is good for us
because it's a lovely course.
“Although
the race starts and finishes on the industrial estate, the course takes you
through some beautiful countryside. It’s going to be fantastic event.”
* Charlie has set up a Just Giving
page for anyone who would like to make a donation https://www.justgiving.com/crowdfunding/lillys-story and for anybody
wanting more information should go to the website of the race organisers www.cutefruitevents.com
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