Mum's plea for level ground to help daughter with rare condition
By Derek Davis
25th Jul 2022 | Local News
A Hadleigh mother has issues a plea for help to provide her teenage daughter with an outs therapy area.
Laura Arvanitidou's Ronni suffers from a rare condition called CTNBB1, which affects just 300 people worldwide, and seriously affects muscle use.
Ronni, who will be 15 in December, and her mum struggled for 14 years before she was finally diagnosed last February and Laura has done everything in her power to help her.
Continuous physio and movement is required or Ronni's mobility is likely to regress.
She has bath aids, electric and manual wheelchairs, and a walking frame and wears splints on her legs and feet to support her feet on the ground.
For the most part Ronni is a typical teenager with two loving brothers, 11 and five, and some pets.
Dog-loving Ronni has an Alsatian (Shogan) and a puppy Nova, and also keeps rabbits, all of which she adores.
"She is absolutely amazing," said Laura. "I don't know what else to say about her - she is now hormonal but an absolutely incredible young woman
"My two sons Freddi and Jaxon are the most caring and kind young men growing up with Ronni"
However, Ronni struggles to leave home due to being unable to cope when exposed to loud noises and and uncertain environments with lots of people.
So staying at home is the family's best option to cater for Ronni, who can become violent when stressed.
Laura admitted: "Going out is really difficult so we struggle and staying in becomes an easier option.
"Ronni tends to hit out at anything or anyone or bite me or pull out my hair."
This is where Laura is seeking help to transform her small, uneven and unsuitable garden into a safe haven for Ronni.
"Our garden isn't suitable for her," said Laura. "For years I've tried to add whatever I can to do it make her happy, rabbit hutch, trampolines and pools but it's just not smooth enough for her frame or chair. It is cluttered because she has nothing she can particularly use also.
"I would like a flat even level of ground with sensory lighting with maybe a swing and some other activities.
"I would also like our trampoline to be put into the ground so she can access it alone to promote her independence."
To achieve this a shed needs to be knocked down, with lots of groundwork and clearing, which would require a large skip.
Laura is aiming to raise £3,000 to cover costs and thanks to friends and neighbours, has already reached £800 towards her target.
Donate to Laura and Ronni's new therapy garden space Just Giving page here...
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