Lily-Marie F's quilt    (Quilt Completed)

Thank you

Lily-Marie received her lovely quilt today. Thank you so much to everyone who helped make it. Lily-Marie is very happy with her quilt. This is such a lovely wonderful charity with lots of kind people making many children happy. Thank you once again xx

Finished photos

Individual squares

Biography

Lily was born in 2009 and at 8 hours old she suffered her 1st seizure. She was transferred to SCBU where she continued to have 50+ seizures a day.

After numerous tests they found out she had a neurological condition called agenesis of the corpus callosum. She stayed in SCBU until she was 4 weeks old. As Lily got older she failed to meet any milestones and was then diagnosed with quadriplegic cerebral palsy. Lily was unable to put weight on and was struggling to eat and drink so at 2 years of age she was fitted with a feeding tube and has been fully tube fed every since.

From around six months of age Lily suffered with very noisy breathing - after months of seeing doctors and them saying it was nothing to worry about just a strider it turned out that she had a condition called tracheomalacia, which is where the windpipe collapses with every breath. Lily had surgery on her windpipe in 2012 to try and help with this but the surgeon was only able to operate on the top part of her windpipe, so she still suffers with her breathing.

Lilys epilepsy was under control from 2010 until 2014. She had a seizure one day in August 2014 and they haven't been able to control it again since. Lily suffers badly with her swallowing / secretions which has made her on a few occasions go blue, she has been given a suction machine to help manage this. The doctors are unsure what or if Lily can see so she was registered as blind in 2013. In 2014 Lily's paediatrician diagnosed Lily as having a life limiting condition.