A Moggerhanger mum is fundraising for a specially-fitted bed for her “cheeky” little daughter.
Ruby Parsons has a rare neurological condition – Alternating Hemiplegia of Childhood (AHC) – which has left her with multiple health issues.
She had her first epileptic seizure at five days old and now has seizures, Hemiplegia, dystonia, global developmental delay and is non verbal.
Mum Claire said: “AHC has been described as the most complex neurological condition ever known and it is multiple diseases in one.
“Ruby will be four on May 1, she is classed as non mobile and non verbal although she has her own unique way of getting around and letting me know what she needs.
“AHC has no cure just yet although specialists from around the world are working on an AAV gene therapy project which could be the cure we have been waiting for.
“As it stands AHC is life limiting and we treat the seperate componants of her disease rather than it as a whole the best we can.
“AHC affects Ruby every day, her seizures are life threatening, she can be happily playing and then all of a sudden she is experiencing a sudden bout of painful dystona or paralysis of one or both sides of her body which can literally last minutes, hours or days.
“She is a real character, she’s lovely, full of cheeky smiles and raspberries. She really does deserve the world and I would give it to her if I could.”
The family is now fundraising for a special bed which can keep her safe while she grows. Ruby also suffers from pica, which means she has the compulsion to eat things not typically thought of as food, and she is eating through a normal bed.
Said Claire: “At the moment she is chewing her way through her cot like a little beaver. Her bed will need to be specially made to accommodate this, with teething plastic covering all visible parts that she can get her teeth into and be big enough for her as she grows.
“We have been so lucky to have been awarded a disabled facilities grant by our local council, it has taken three years so far to get to this point and they have now secured a builder so that an extension can be built on to our family home comprising of a ground-floor bedroom and bathroom for Ruby and work should begin within the next couple of months.
“So, she needs a specialist bed, and some furniture and storage to furnish it which is what I am raising money for.
“Sometimes, you just have to swallow your pride and ask for help, so here I am, unashamedly asking for you to help me make my little girls life easier and more importantly safe and comfortable for her”
Claire, a mother of five, is Ruby’s main carer.
“Her seizures are quite awful,” she said. “But she is adorable and a cheeky little thing, she has got her own character.
“Her siblings all deserve the world, they are very understanding.”
Claire is planning a fun day at her Moggerhanger home on June 1 and is now appealing for donations for raffle prizes.
To find out more about Ruby’s story and how you can help go to https://www.facebook.com/rubyahc
To find out how you can donate to Ruby go to www.justgiving.com/crowdfunding/rubymeahc?