Thanks for taking the time to visit my JustGiving page.

Running a marathon is a challenge in itself as I found out last year so I thought I would challenge myself further and run my 2nd marathon BACKWARDS. I shall be training hard over the next few months and taking part in the Brighton Marathon on 10th April.  I am doing this for Darcey and to raise awareness of GAND and raise lots of pennies for Helping Hands for GAND Inc.

I have had the pleasure of knowing Darcey all her life. Darcey was diagnosed with GAND in 2021.

Darcey is a very special 8-year-old girl.

Those that know her would describe her as a funny, sociable and helpful, Duracell bunny.  More fearless and curious than a toddler on a
mission.

If you’re meeting Darcey for the first time expect to be greeted by a ‘shush’, ‘don’t move’ or a cross between a cartwheel and handstand – if you’re lucky all three.

She has a wicked sense of humour and style – yep if you didn’t know it already two scarfs, five headbands, and two bobble hats will be a key trend next year. You heard it here first!

IF Darcey was only ever granted one wish in her lifetime, it would be to talk (and then to ask for a pony.)

Darcey has a very rare genetic disorder, which meant her brain didn’t develop fully when she was a baby.  The condition is called GATAD2B-associated neurodevelopmental disorder or GAND for short and is known to affect around 200 people worldwide.

It causes:

Severe learning and language difficulties

Feeding difficulties

Crossed eyes

Low muscle tone

Darcey is also epileptic and autistic, both of which are also common in those with GAND, which makes life extra challenging.

For Darcey though it’s the learning and language difficulties she struggles with the most, which at the flick of a switch can turn her from her adorable self into the incredible hulk (without the green tan and muscles). On a good day, the hulk will make a couple of short appearances, but on the bad days he’ll hang out like one of the family but tearing up every inch of the house, lashing out at everyone and everything, and worst of all self-harming.

Whilst it’s great that Darcey finally has a diagnosis, the condition is still considered relatively new and rare in the world of medicine so there isn’t a huge amount of research and development into it or a support network in the UK.

And this needs to change so that rare and special children like Darcey no longer have to try and cope with what every new day throws at them but so they can have a childhood like every child should – carefree and living each day to the full.

Thank you for your support.

Pete