About

Our beautiful angel Lilly was born on the 16th July 2014. Lilly was brought into our lives very quickly and unexpectedly, After being rushed in for an emergency Caesarian section at 36 weeks pregnant, Lilly was born 5lb 10oz and was 44cm long. From the very start Lilly was a fighter, and tried her very hardest to battle as the doctors tried to treat her seizures, and encourage her to breathe a little better. At first the doctors thought Lilly's condition she was in was due to oxygen deprivation, but on 28th July, following an MRI scan, the doctors discovered Lilly's PMG, as well as the expected lesions due to the lack of oxygen. Lilly was so very brave and strong, as she battled with frequent seizures on a daily basis. Lilly needed 24hour supervision 7 days a week so was surrounded by Doctors, nurses, various medical equipment and monitors, as well as having to undergo several medication swops and changes to try to control her seizures, and a very slow and lengthy process of stopping and starting little and often amounts of milk via feeding tubes to try and get Lilly to tolerate feeds. After 6 long weeks Lilly began to tolerate her feeds, and started to become stronger. Lilly spent all of her life on breathing support, she was intubated at birth, and after a week Lilly was put into high flow (vapour therm), and then varied between a little low flow and on her bad days cpap, but we had one miracle period where Lilly managed to go 36 hours without any breathing support at all..... Lilly's seizures became increasingly stronger and more and more difficult to control, Doctors tried everything that they could and Lilly still continued to fight. Lilly went through more in her little life than some people do in a whole lifetime. Lilly touched so very many people's hearts, she had captured the love of those in her life and people that had only been told about Lilly. People she hadn't even met were praying for her daily and hoping that she would pull through. Soon after Lilly was diagnosed with polymicrogyria, we went on the hunt to try and gather any information we could, which proved difficult due to the vast spectrum of cases, and that was when we found support from a charity called Polymicrogyria Family Support, they help families affected by Polymicrogyria, the condition that Lilly had. We received a very warm welcome to the group and it was lovely to speak to people that knew all about the condition, families that had been through similar journeys, and families that could share their experiences with us. It was nice knowing that what we were going through, we were not going through alone. Sadly we were faced with the devastating news that the Doctors couldn't do anything else for Lilly, and it had become clear that the time we had with Lilly would be short. It was now about giving Lilly a quality of life as opposed to quantity. We were transferred to our local hospital with Lilly in the hopes we would be able to one day take her home, even if for only a couple hours a day. Once we were closer to home we were able to make fonder memories with Lilly and Bella her big sister. When Lilly was born she had to be transferred to a hospital miles away from our home and so our lives became turned upside down and our family torn apart due to the constant separation, one of us would be in hospital with Lilly, and the other at home with Bella, so the final weeks that we spent together as a family were so precious and we were able to have Lilly christened on the 20th September. Lilly sadly grew her angel wings on the 6th October, 8lb 11oz, 52.5cm long, and our family was left heartbroken. We know that her memory will live on through us and her big sister, and in the hearts of everyone whose lives she has touched. During this hard time the group have been an amazing comfort and support to all of us including Bella. If you would like to make a donation in Lilly's name the money will go towards the charity supporting other families affected by this condition. Lots of children with Polymicrogyria sadly get poorly or have to undergo surgery, EEGS and spend a lot of time in hospital. The charity sends balloons to these children whilst they are in hospital to put smiles on their beautiful faces. It also organises family days out where families get to the chance to meet and share their experiences in person. The Charity has a vision of building a holiday home specifically designed for the needs of children and adults alike with Polymicrogyria, with a sensory room, hydro therapy pool and a soft play area. 'An angel in the book of life wrote down our baby's birth, and whispered as she closed the book, too beautiful for earth' fly high precious Lilly we love you with all our hearts.'