Just4Children are fundraising to ensuring that Aria has the medical treatment, therapies, housing, adaptations and equipment needed to live her life to the full.
Aria has been through so much for someone who is just 4 years old from Norwich. However, despite her life threatening conditions she is strong and determined and she continues to surprise us every day.
Her story is a long and complicated one which began at a 32-week anti-natal scan where Aria was diagnosed with severe ventriculomegaly and very little brain matter. It was at this time that we were advised to terminate due to a significantly high chance of a very poor quality of life. This was not an option for us.
Since then she has been diagnosed with 12 different conditions, had 3 brain surgeries and too many hospital admissions to count.
One of her conditions is cerebral palsy which makes her legs very stiff and she walks on the tips of her outer toes. Various treatments have been tried to support with this but they have been unsuccessful.
Aria has now been referred to Alder Hey hospital to look into the SDR surgery to help reduce her high tone and improve her walking. However, it is unlikely that this will be funded by the NHS due to Aria’s brain damage.
Our current home is completely unsuitable for Arias needs and puts her at risk of harm. Due to us no longer being able to carry her upstairs she is now sleeping in the living room, meaning she only had access to a single room and is unable to access a bath or shower.
We have been on the housing list with our local council for over 4 years and have been considered an emergency and priority for 3 of those, but no suitable housing has become available.
When a suitable house does become available we will need to make adaptations and purchase equipment to ensure that Aria’s needs are met, that she is safe and that she is able to live her life to the fullest. These adaptations would include a wet room, an extension to ensure her bedroom is big enough for her safe space bed and to provide a sensory room, as well as other equipment and adaptations.
Follow Aria on Instagram