Lily’s story written by her mum Steph
Lily was diagnosed with Pachygyria on the 15th May 2015. Pachygyria is a rare brain disorder due to abnormal migration of nerve cells (neurons) in the developing brain and nervous system. Because of the Pachygyria Lily has a number of health conditions including Migrational Epilepsy, global development delay, Cerebral Palsy, feeding difficulties, behaviour difficulties, vision concerns, dysphagia & recurrent respiratory problems. At this point we were told Lily would never walk, talk or live past the age of 5 years old! I was then told Lily had Polymicrogyria too in a small part of her brain. Genetics told us Lily was only the 3rd person ever to be medically diagnosed with the exact same brain structure! Lily is now 7 years old and defying odds. Although her brain still functions at 18/24 months old, Lily can talk and uses Makaton to assist. Lily can also walk, however has constant swelling in the feet and legs causing pain and discomfort.
Lily is the happiest child you will ever meet and she lets nothing effect her! We’ve been in and out of hospitals for the majority of Lily’s life. Lily has recently had a Vagus Nerve Stimulation (VNS) to try and help control her Epilepsy although despite that, and along with four medications, the doctors have now said there’s less than 5% chance of Lilys Epilepsy being controlled. Not the news we wanted, but Lily is still here fighting and while she is, so are we!
In February 2020, we were granted with the dream of a life time! A wish granting charity called Starlight made it possible for us to go to Give Kids the World village in Florida (GKTW). It was so nice to be able to go and not have to worry about hospitals/therapy’s and appointments for a while and just enjoy time together as a family! We visited Disney World, Universal Studios & Waterworld and had such an amazing time! Although nothing compared to GKTW! The volunteers were absolutely incredible with all of us!! Nothing was too much for them! There was nothing but smiles and happiness! Coming back was the sad part!
We are allowed to visit GKTW again as Alumni’s, however flights to Florida are not cheap! Having somewhere in the UK we could go to and just breath, would be absolutely incredible! For every family with children who have a life limiting conditions, a place for them to visit once in a life time will honestly impact them so much. The memories are ones to last a life time. And I hope many more families get to experience something like this!!
