My names Ella. Am a 30 year old mum based in Yorkshire.
I Gave birth to my beautiful daughter Ada in June 2022 and since that day it has been an uphill climb. We had a perfectly healthy pregnancy and everything seemed fine even after she was initially born. But over the coming months we quickly started to realise that something wasn’t right.
By the time Ada was 4 months old she still wasn’t providing any eye contact and couldn’t lift her head off the floor still. We grew increasingly concerned, and after trying to be heard by mutiple doctors and professionals we decided to take her into A&E.
At first we thought she might just have a lazy eye or might need glasses. But after being seen in A&E they were very concerned about Ada and agreed that something wasn’t right with her eyes.
we saw an ophthalmologist that day and he said her eyes were perfectly healthy however it was clear she wasn’t seeing. He was concerned about pressure within her brain so we was sent for a MRI scan that day.
After Ada’s MRI we learnt that Ada has a Large arachnoid cyst which takes over a 3rd of her brain. Unfortunately it has developed during the early stages of pregnancy and was missed during our pregnancy scans.
Her MRI also showed further brain abnormalities, including polymicrogynia, along with part of her brain that had not developed.
Ada was diagnosed with cerebral vision impairment that day, which is a brain based vision impairment, meaning her eyes see but her brain doesn’t receive all the information.
This means Ada can see high contrast and light but doesn’t see detail and has complete face blindness.
She was also diagnosed with brain damage.
Over the last two years, we have discovered her disabilities aren’t just to her vision. Ada has developed Epilepsy, is non verbal and displaying complex autistic traits she is now peg fed, and has complex sensory processing needs. She has dystiona which affects the whole right side of her body, meaning she cannot walk and struggles to gain strength and stamina. She has reduced movement in one side of her body.
she is globally delayed meaning her currently neurological development is currently approximately 6-8 months of age.
On a more positive note over the last 6 months Ada’s social skills have been developing. She is slowly starting to develop purposeful movements and she is developing relationships with her closest family and friends.
We have been taking her on lots of days out to help support her develop a tolerance to her auditory surroundings and gain confidence in socialising and learning about the world around her.
We recently had a very positive experience with Ada at the Deep ( sealife based centre) in Hull, where she interacted with an interactive projector system called the Omi Budii system.
we experienced Ada being able to see the bright lights and moving objects of the projector system and was using her hands to purposefully manipulate the waves in front of her. This was a MASSIVE development for Ada, and we would really love to be able to support Ada and provide Ada with a Omi budii system at home where we can adapt it to her learning and support her overall development.
This is the link to the company that makes them, and we are hoping to raise enough money to purchase the system for Ada.
We would honestly be so grateful for any contribution no matter how big or small so we can make this possible for her.
we want to keep pushing forward in any way we can to support her development. These early years are key to her having the best quality of life long term.
Thank you so much
Ada’s mummy, Ella
Organizer
