Ruby had her first seizure at 5 days old, her epilepsy remains uncontrolled after 7 medications have failed her. Ruby has a rare neurological condition called alternating hemiplegia of childhood (AHC) her epilepsy is part of this as well as hypotonia, dystonia, attacks of paralysis, atonomic episodes, cerebal palsy, uncontrolled eye & body movements amongst other things. AHC has been described as the most complex neurological condition ever known & it is multiple diseases in one. Ruby will be 4 years old on May 1st, she is classed as non mobile & non verbal although she has her own unique way of getting around & letting me know what she needs. AHC has no cure just yet although specialist 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 & we treat the seperate componants of her disease rather than it as a whole the best we can. AHC affects Ruby everyday, her seizures are life threatening, she can be happily playing & 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 😞

Ruby is such a special little girl who is full of cheeky smiles & raspberries 🙊she really does deserve the world and I would give it to her if I could. Being a parent of a child with additional needs is a constant fight for specialist equipment and services. At the moment Ruby needs a new safe space bed, as she has no concept of danger, her cot is becoming too small for her. Ruby has pica as part of her condition which means she is always chewing on and or trying to eat things that she shouldn’t and at the moment she is chewing her way through her cot like a little beaver! Her bed will need to specially made to accommodate this, with teething plastic covering all visible parts that she can get her teeth in to 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 3 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 💕

Please look for our page on Facebook, you can find us by searching Ruby, me & AHC or @rubyahc

Thank you xxx