BiographyLillie was born at 30 weeks. We were told she may not survive the first 24 hours. She spent nine weeks on nnu. She was sent home with a feeding tube down her nose.
In her first year the longest period she spent at home was three weeks. Her reflux was so bad it was entering her lungs and causing pneumonia. Her hospital stays were 2-3 weeks each time.
Sitting position and travelling movements made the reflux worse so she had to be laid flat all the time. She wasn't allowed to travel by buggy or car unless it was to hospital in an emergency. We were prisoners in our own home.
Five days after her first birthday Lillie had an operation. She had a funduplication to stop her reflux and a peg tube inserted into her stomach for feeds. We were told to expect to be in intensive care after the op and that she would be discharged after 6-8 weeks. Amazingly she didn't need intensive care and was discharged after three days!
In Jan 2013 after a lot of fighting we finally received her diagnosis of cerebral palsy.
Since then we have been through fight after fight. We fought for 15 months for her specialist seating. We are currently fighting for a lift and hoists and for her to go the school of our choice.
Last year we raised £22,000 for Lillies eye gaze communication device, innowalk machine, trike & car seat as no funding was available in our area (as is always the case).
Even with everything going on Lillie is a very happy little girl. She cannot sit, stand, swallow or talk. But that doesn't stop her smiling :) x
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