Lilia is inspiring in how she always strives to be her best. Lilia is working towards independence and a fulfilling life of possibilities. Lilia was born on the 10th October 2013 after a very very long wait of 41 weeks and six days. She was overdue by 13 days but the pregnancy had been all things lovely and her parents, Amy and Liam, were extremely excited to meet their first baby. After a straigh
tforward pregnancy and labour Lilia was born quickly after her heartbeat was lost by the midwife. The emergency cord was pulled by a shocked and distraught Liam and the amazing doctors came at lighting speed. The baby was taken away into the emergency room and resuscitated for 9.5 minutes. The beautiful baby had come back from the dead, her determination being a sign of things to come. Lilia had been deprived of oxygen for approximately 28 minutes and was pronounced HIE Grade 2. Amy and Liam saw their baby for the first time after 30 minutes and only for a few seconds before she was taken to the NICU to be ‘cooled’ to just above hyperthermic temperature. Lilia lived for the next hour, and the next, and by 5 hours later she was breathing by herself. She was cooled for the next 3 days. Amy finally held her baby for the first time on her 5th day. After 72 hours everyone waited for a whole day to see if the baby would survive being ‘warmed’ back to normal temperature. Lilia has seizures during her first week of life but she did surprise us all and continued to live. Amy and Liam were told that the chance of brain damage was probable but to what extent would be unknown. Lilia began to miss milestones from an early age. She did not put her hands to her mouth, roll over, sit up, and the list goes on. At 5 months old Amy and Liam were told that Lilia had Quadriplegic Cerebral Palsy (affecting all of her limbs and body). However, one thing she did do was SMILE. She smiles all the time. She laughs lots (except when she is doing her physio!). She loves to play but does become frustrated when she finds this difficult. Lilia has many appointments with her Physiotherapist, Occupational therapist and the speech and language therapist. In addition she attends a charity therapy centre every few months to track her progress and learn new physio techniques which the NHS do not always have the time to do. Amy was told that Lilia would never walk. Nobody truly knows if this is the case but we are determined to give her the best chance possible. Lilia loves to be around her friends, family and those she considers her 'framily', and she desperately wants to join in with everything. Amy and Liam are committed to her having as many experiences as possible in her life, and not missing out on anything due to her condition. This is why they would like to raise money for a specially designed trike. These cost anywhere from £1000 - £6000 as they are specially adapted. Lilia would also benefit hugely from a new therapy called ‘Therasuit’ therapy which is currently happening in America. This is a 3 weeks course of daily 4 hour therapy while wearing a space suit, as well as oxygen therapy to help heal the brain. This will cost in the region of £15,000 so the fund raising has now begun. We know Lilia is one of the luckiest little girls ever as she has so many amazing, lovely, thoughtful people in life….you know who you are…we love you. Thank you so much!!!
