Parents of seven-year-old girl with rare condition hoping to raise £5,000 to make home safe

Ellie-Mai Knight suffers from a very rare genetic syndrome called Temple-Baraitser syndrome which comes with many complications, such as not knowing what is safe and what is not.

The seven-year-old now needs a fully padded room to be safe during a seizure and parents Sherri and David have started a Go Fund Me page to try and help raise the £5,000 needed.

Sherri said: “Ellie-Mai is nonverbal, so she can not tell us if something is wrong.

“Two years ago, we started this journey to get our house sorted but things kept getting pushed back due to covid.

“We want to raise this for her to make all areas of the downstairs safe for play and for her to be able to feel like part of the family in the house and also the garden.

“The need for the house and garden to be made safe is very urgent.”

Ellie-Mai has two brothers - Shaun, 14, and Reggie, 4 - and one sister - Amelia-Lily, 9.

You can donate to the Go Fund Me page here.

If any companies are able to help Ellie-Mai, they can contact Sherri on [email protected] or call 07423605898.

A little from Ellie's eyes

Hi my name is Ellie-Mai, I am 7 years old and I was born with a rare genetic condition called Temple-Baraitser syndrome, this means I have various dysmorphic facial features, server globle delay, epilepsy.

I can only walk very short distances and often fall and hurt myself. I am nonverbal and communicate with my hands and sounds so my mum and dad know when I want my favourite snack. I have serve autism also so life can be challenging.

The things I love:

- My bed is my safe space - no pun intended – as my bed is called a safe space voyager!

- I like to relax in here with my juice watching my favourite programme Cocomelon.

- I love to play in my bedroom but often get bumps and bruises, I love soft play and sensory toys.

- I love music and laughing when I see people dance.

- I love going outside into the garden to play with my brothers and sister but can only be outside whilein my wheelchair as mummy and daddy don’t want me to get hurt.

I suffer with a condition called Pica which means I will eat anything so a lot of things are not safe.

When mummy is cooking unless I am in my chair I can not be in the living room as it is unsafe because I would pull things off the cooker and sides.

A day in the life for me is waking up having my Weetabix - like I do everyday.

I take all my medication and then mummy, daddy or my big brother Shaun will help me get dressed. I will then play in my room with my brother or sister while mummy does the cleaning up. I need at least one sleep a day as I get very tired. I like to be alone but can only do this when I am in my bed as my room is not safe if I was to fall or have a seizure.

I have a daily routine I like to follow and my bedtime is always the same. I love to cuddle up with my giant teddies and look at the pictures in books.