Lillie was born at 30 weeks on 15/07/11 weighing 3lb 14oz. She suffers quadriplegic spastic & athetoid cerebral palsy, chronic lung disease of prematurity & is colonised with pseudamonus. She spent 9 weeks on the Neonatal Unit at New Cross Hospital. Lillie could not swallow so she was fed via an ng tube down her nose. In her first year the longest period Lillie spent out of hospital was three weeks. She had severe reflux which was continuously entering her lungs causing aspiration pneumonia. This is a life threatening condition. In July 2012, just five days after her first birthday, Lillie had a life saving operation (nissen funduplication & gastrostomy) to stop the reflux. At the same time she had a peg tube fitted which means she is now fed directly into her stomach and no longer has an ng tube down her nose. In December 2012 we finally got Lillie's diagnosis. Her condition means she cannot sit unaided, stand, crawl, walk or talk. In 2014 we raised £6800 for an Eye Gaze with the help of the local public. This is a computer which Lillie is learning to control using her eyes. At the moment she uses it to play games but in the future she will move on to using it as a communication device. We had to fundraise for this as Walsall do not fund them even though their neighbouring council Wolverhampton do. We are extremely grateful to everyone who donated and helped us get the Eye Gaze in time for Christmas.
We also had to raise £11,000 to buy an innowalk. This machine completely supports the user but helps them to move their legs to exercise. It reduces the spasticity the user suffers which means they can instead concentrate on doing everyday things like trying to hold their head up, trying to grasp items etc, instead of concentrating on trying to relax their muscles first. It can improve digestion, sleep pattern, muscle strength, the pain associated with spasticity & much more. We had to raise £1285 for a specialist trike & £2197 for a specialist car seat for her.