Get Lilia Movin'



A lovely little girl called Lilia….

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 straightforward pregnancy and labour Lilia was born 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 over 27 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 knows if this is the case but we are determined to give her the best chance possible.

Lilia loves to be around her friends and cousins and wants desperately to join in.  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 her ongoing therapy and operations which are not available in the U.K. Lilia attends the NAPA centre in the USA and undergoes 3 weeks of intensive daily therapy to help her muscles get stronger and teach her how to move in ways which are beneficial to her. Each intensive session costs in the region of £15,000.  Lilia is also hoping to have stem cell therapy in Panama as well as life changing orthopaedic operations which are not available in the U.K., one of which is called SDR and costs £80,000.00 which includes a years worth of aftercare. Lilia is not eligible for this operation in the U.K. due to the severity of her condition. The NHS do not see it as cost effective or worthwhile. It would help her to walk and eliminate a life time of pain which is due to the spasticity (tightness) in her muscles.
Lilia has recently been granted her first ever power chair. She loves it and in just two weeks her confidence has increased so much. Unfortunately this power chair is a ‘one size fits all’ from the nhs and it is sadly geared towards a rehabilitation user and not someone who will rely on it for most independent movement. It doesn’t move up or down or get into places a 5 year old would like to get into. For this reason we are being assessed for a snapdragon power chair which can fit to any table when at school, home and out and about. The seat would also be custom made to ensure Lilia’s positioning is right and not put pressure on her hips (which the current power chair does not do...Lilia isn’t seated correctly and her hips are at risk). Taking care of her seating now will hopefully help to prevent long invasive horrible surgery in the near future. These power chairs cost approximately £21,000.
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. Xxx