Lenya Athanasiou and Michael Hayward are organising this fundraiser.
Hi, my name is Ivy, I have just turned 4yrs old and I need your help :) I was born a very happy little baby but as the months went by my mum started to notice that some things were not quite right, I was not meeting my milestones and I was still like a floppy noodle. When I was around 16months old I massively regressed and everything I had learnt sadly disappeared. I created an ivy bubble as I could no longer understand the world around me. We’ve seen many health professionals and after a long journey of allllll the testing, MRI’s and biopsies we are still none the wiser. Investigations into a diagnosis is now with the genetics team at Nottingham city hospital. So where does that leave me now.....at 4yrs old I am still non-verbal and unable to be consistent with my communication, I have global development delay of around a 1yr old, sensory processing disorder which means the pathways from my mind to body are a little disconnected and severe hypotonia, this is what causes me to be very floppy. I am still unable to sit and play, crawl or weight bare which means I need constant support with all aspects of my life. Some people may find it frustrating not having a diagnosis but I know there is no magic pill to “fix me”. I realise that it’s the early intervention and ongoing therapies that will help me progress, access and understand the world.
my mum has set up this go fund me page to help raise funds as we all know that specialist therapy and equipment comes with a high price tag so I hope the donations will contribute towards the ongoing and much needed therapy sessions, equipment and assistive technology!
With the funds raised it is important for me to tell you where the money would be spent. Firstly I would like it to help with my mobility and improve my strength, I would like to attend weekly physiotherapy sessions, and when the weather is nicer I would like to try some pony riding at the local RDA. I would also love to treat myself to swimming sessions (hydrotherapy) as I try harder when I’m in the water. Secondly, I would love to be able to learn how to express myself so I can communicate with my friends and family, hopefully having monthly speech and language therapy i can progress in my communication skills. I’ve taken an interest in using an iPad so I’m hoping I can learn how to use one. Thirdly, I’ve had my eye on an ikan brace, this is a full body brace that will help keep me aligned when I sit, stand and walk, we’ve been quoted a whopping £1700! This inclusive piece of equipment is not available on the NHS. It would be ideal to take to the farm so I can get close enough to pet the animals or attempt to walk in different environments such as through puddles or leaves or even try to jump on the trampoline at the park.
There are many other little things that I would like to purchase such a switch button to help me play with toys, some sensory toys, a dark den to chill out in when the world gets too much, visits to the local sensory room, days out and adventures to help me learn through real experiences.
If we exceed our target I would like to go to a conductive eduction centre which hold an intensive therapy program either in Poland or Hungary! I would also like to create a sensory garden that is a safe space away from the dogs as I love being outside and If I find swimming to be very beneficial then I would treat myself to a small jacuzzi so I can continue my hydrotherapy at home
Now don’t get me wrong, the NHS have been fantastic and have supplied me with supportive equipment but they are so stretched that my sessions are few and far between. Any donation, big or small, would be truly appreciated and you would be helping a very special little girl.