Dunmow girl, aged five, wears little green dress to help raise awareness for rare condition

Evie (Image: Archant)

Evie Malins was diagnosed with CDKL5 at just two-years-old; a rare genetic disorder which affects neurological development, including the ability to walk, talk and eat.

Aiming to raise awareness, CDKL5 UK sends out a little green Tinker Bell dress, and so far, the garment has gone as far as America.

Sarah Malins, Evie’s mother, told the Broadcast: “Evie has epilepsy and has seizures everyday. When I found out she had CDKL5 it took me a week or so to get my head around it.

“I liked a group on Facebook and the lady who started CDKL5 UK messaged me. Her daughter has it too and she started the dress idea.”

Evie (Image: Archant)

The fairy dress arrives in a box full of letters and gifts from previous families, complete with pictures of the children in the outfit as well as their names and addresses.

CDKL5 is found in the X chromosome, making girls more likely to have it, although the box does come with a green tie if it is passed on to a little boy.

Each recipient is asked to add to the box, and Evie received green hair bands and clips from the previous owner.

“We had the box for about four weeks. It took me a while to get through it, and the dress just about fitted Evie,” Ms Malins added.

“It is very emotional reading all the letters. There is a teddy in the box too for those children who can’t wear the dress, so they can dress the teddy instead.”

“It makes you feel linked and it’s nice to read the messages and know that other people know how you feel. I’ve learnt more through the charity and parents than I have from the doctors.”

Ms Malins is now on the board for CDKL5 UK, and money from her ongoing fundraising is split between the charity and Evie’s physiotherapy costs.

Once a week, Evie has a session at Kids Physio Works in Colchester where she is taught to work her core strength.

During therapy, she wears a TheraSuit with bungee ropes attached. These are then hooked onto a metal cage-like frame, encouraging Evie to work her muscles.

In fact, Evie has her own fundraising page to help fund her physiotherapy, with the hope of collecting £13,500.

At £70 each time, this will be enough to fund her sessions for the next three years.

“I love going to the sessions,” Ms Malins said.

“It’s quite relaxing actually. They are a great group of people there. Evie has to work hard bless her, but it is a lot of fun.”

Now in Broxbourne, the dress has set off on its travels again.

“It’s not been in the UK for a while, so it’ll be nice to have it over here for a bit. I received mine in the post which was lovely, but sometimes we trade them over lunch; we try and meet up with the other families when we can.”

To donate, visit www.justgiving.com/eviescdkl5journey.