BiographyDarcee Ella was born at home after a perfect pregnancy and missed her due date by two hours. She was a happy baby very quiet and loved to observe what everyone was doing. Around a few months old, I realised she wasn't developing as she should, she never babbled and was delayed with milestones, and the ones she did reach she never fully mastered them and lost skills for time to time.
When she was one year old she stood out more from other children in her age group due to her delays. When she began to walk her ankles were very 'Rolly'. She struggled to keep her balance even after months of practice and still continued to walk into walls and objects whereever she was. She had a lot of early intervention but no one could quiet put their finger on what was 'wrong' with Darcee Ella as a whole. She still lost skills and didn't progress much.
At the age of two, just after Christmas she regressed a lot. She stopped making the usual sounds she made, the things she enjoyed and started to have large seizures out of the blue. She had an MRI and EEG which picked up a malformation on her brain but couldn't pin point if the seizures was coming from there.
Seizures got worse and worse and more and more, medication was tried but none could get a hold on them. She started a special school which she loved especially the outdoors swimming and all the staff and winning them over with her prize cheeky smile.
Over the next few months Calling in ambulances became a regular occurrence due to seizures. Her balance got progressively worse and her bumping into objects also did too. School was as concerned as we were.
Genetic testing had been done over the years but nothing had come back positive so more blood was taken in hospital. She was booked into Leeds hospital to start the ketogenic diet I had all my fingers and toes crossed that this would have an impact on her epilepsy.
A few day stay turned into nearly a month. Darcee Ella rapidly regressed almost over night taking away her fun loving personality with it. In the space of a week she lost the ability to eat, drink, sit unaided, stand and walk. Her EEG showed constant brain activity all over her brain. Consultants was very worried and I was told to prepare myself as they were sure she had a neuro degenerative disorder. I was devastated.
She eventually came out of hospital and a few weeks before her 4th birthday, I was told she had a positive test result for late infantile battens disease. A truly devastating rare neuro degenerative disease with no cure, that will take away my little princess - steal all of her abilities which are left and her sight. She will lose her fight with battens between the ages of 6-12 years old. She has just celebrated her 4th birthday.
She has become very distressed at times and hard to settle. She becomes very sleepy and struggles with being moved around and is now 100% peg feed. Darcee Ella is also becoming very light sensitive with her eyes. She needs all aspects of her care by myself (mum) 24/7. Her seizures have become worse and regularly needs oxygen for a long time.
Now the happy stuff! She is a funny cheeky little girl that when she smiles she lights up the room. She adores her brother Reuben and dog Stella especially when they've been naughty - she finds it very funny! Her favourite thing is wind turbines and windmills. She loves all animals, especially horses and dogs and would spend all day snuggled in blankets in her p pod if I let her- I get told off with lots of squawking if I try to move her!
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(Quilt Completed)
