Darcee Ella was born on time on the 30/8/2013. Every thing was perfect and she was such a smiley happy baby. When she was a few months old I realised she wasn't developing on target as she should be she was a lot more slower to reach any targets. shortly after her first birthday my concerns grew more about her not developing as she should. she never made a sound and gross and fine motor skills was severely delayed there was also a query over absent seizures intervention began to take place. A lot of medical professionals had ideas of autism like her brother or dyspraxia but no one was entirely sure so more tests took place over the years.
When Darcee Ella reached two she began to have seizures which involved lots of jerking and her complelty unaware these progressed over the weeks and came more and more frequent. MRI confirmed she has a malformation in her brain but we was unsure if the seizures was coming from the part in her brain that was malformed. Her seizures got worse and worse and no medication as of yet has taken any control over them. She has focal, focal with secondary generalisation, tonic clonic, drops, absent seizures and wears a helmet to protect her head. During the beginning of 2017 there have got so out of control she can have hundreds a day and getting a hour with no seizure activity is very rare she requires rescue medication every day and now oxygen during seizures as she becomes very grey.
In June we went as a instay at Leeds hospital to start the ketogenic diet. A diet which is lead by dieticians and the hospital which can help people with refractory drug resistant epilepsy. She became really poorly whilst there and a stay which should have been a few days ended up 3 weeks with more rescue meds and consultants seeing how bad her epilepsy is. She deteriorated rapidly regressing every day. My little princess who went into hospital walking unsteady and able to move around could no longer stand walk
Sit without support and no longer eat and drink she now is fed through a peg tube. Every one began to worry and more testing was done to determine what was wrong. Her eeg picked up constant spike waves over her whole brain her MRI was mentioned to have brain volume reduction and multiple blood tests was done. I was told they think she has a neuro degenerative disorder. Battens was mentioned but I was determined this wouldn't be right. Consultants visited at home over the weeks so I knew some thing was seriously wrong. On the 2nd August we was visited at home and was given the devastating news my gorgeous little girl has late infantile battens and her life was been taken away from her. Children which have this very rare disorder will only life until the ages of 6-12 years loose all skills and will loose their sight amoungst many other heart breaking things. I am looking to raise money for her for equipment she will need one is a more suitable wheelchair which will suit her when her body is stiff and provide amazing support and carry all her equipment- feed and feeding pump sats monitors suction machines oxygen etc. Also sensory equipment and for her to do many experiences and see so many things before her sight is taken away from her. Any thing would help. Thank you for reading and your support xxx
Hugs and kisses from Darcee Ella
- Chris Saunders
- Peter Buckley
- Sally McIntosh
- Teresa Coton
- Vanessa Mclellan
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