Fifteen month-old Lily Ann Hood was diagnosed with pachygyria, a rare developmental disorder earlier this month and this has prompted mum Steph to do all she can to support her daughter as well as other children with the condition by fundraising and helping to raise awareness.
Pachygyria is the result of the abnormal migration of neutrons in the developing brain and nervous system. The condition can affect people differently but usually causes developmental and intellectual delays as well as epilepsy. The condition also causes poor muscle tone, poor muscle control, difficulties in feeding and swallowing and smaller head size.
Due to her condition, Lily also has cerebral palsy and respiratory problems along with all of the associated developmental delays. As of yet Steph and the rest of her family are not sure if Lily will ever walk, talk or be able to live a long life.
Lily has spent much of her young life in and out of Birmingham children’s hospital as well as being under many different specialists including neurologists, occupational therapists, physiotherapists, speech therapists and respiratory specialists.
Even though life can be a challenge and full of uncertainty for the Hoods, Steph is determined to help Lily live life to the fullest. She has set up Lily’s fund in order to directly help Lily and is holding a number of events to raise money. Everything raised will be split between Lily’s fund and Cerebra.
“We are raising money for Lily and other children with Pachygyria, Cerebral Palsy, respiratory problems and rare diseases. We wanted to help Cerebra to enable them to help us and other children with brain illnesses,” Steph said.
Steph has a number of events lined up over the summer, the first of which being the deceptively titled “Walk in the Park” and is encouraging everyone in her local area of Bedworth to come along and show their support.
You can keep up to date with Lily’s progress, as well as upcoming events that Steph will be organising through their Facebook group “Lily’s fight against Pachygyria”.
If you would like to donate to Lily’s fund and support their cause, you can do so through the Go Fund Me page.