Light up Lily's Life

Lily was a happy healthy baby up to being 7 weeks old, where at home on the 20th September 2015, she suffered a seizure at home, she was taken to hospital of which our world was turned upside down within minutes. After another seizure she was sent for a CT scan which showed a bleed on the brain and a lesion. She was then taken to central Manchester children's hospital. Where a MRI was done which showed Lily had Vain of Galen Malformation which affects 1 in 5 million, and a bleed on the brain. Only two hospitals in the country Scotland hospital (Glasgow) for sick children or great almond street children's hospital. The next day we were road ambulance to Scotland. On arrive Lily seemed settled however 4 hrs after arriving she started having seizure after seizure, they did another emergency CT scan which showed the bleed was getting worse. So before her scheduled open, she needed to have a cafiter placed in her head to sort the bleed. She went down that night, they did what they needed to do and she pulled through, Lily was then placed into critical care unit, however continued to have seizures although the machine was breathing for her. Before her scheduled vain of Galen open, they did another emergency CT scan and this now showed a blood clot on her brain, which then made the VOGM op even more complicated as if the blood clot hits the vain, Lily would die, however Lily got through the op and spent the next 5 days in the critical care unit. She then after 5 days came round and was placed in the high dep unit to be monitored. Once they were happy with Lily, she was still very ill however could return back to Manchester children's hospital to do her recovery. Lily in Scotland suffered 69 seizures, which left her with brain damage on both sides of the brain. She also has a condition called visual sight delay, which means she can see one or two items, anything more she can't see, moving objects, she can't see. She is on anti epileptic drugs to control the seizures, her head is still getting extra fluid and awaiting a further brain operation to place a shunt in her, however they want her to fully recover from her last 2 brain operation first, we are still in hospital of which each day she is becoming more alert, however we don't know how the brain damage has effected her yet as she is only now 11 weeks old, she does however respond to sensor lights.

So I'm hoping to raise money to raise enough to buy 2 mobile sensor units one for the house and one for the local play centre, so I'm able to take Lily there also helps other children with special needs to benefit from it.

I understand its a lot to ask for however, I'm hoping to raise money by doing fundraising as well. Any help and support will be appreciated. ThAnk you for taking time in reading Lily story.