Lily's fight against pachygyria

On Wednesday 15th May 2015, my 15 month old daughter, Lily Ann Hood, was diagnosed with pachygyria. Pachygyria is a rare developmental disorder resulting from the abnormal migration of neutrons in the developing brain and nervous system. People with this brain disorder have developmental delays, intellectual delays and epilepsy. Poor muscle tone, poor muscle control, feeding/swallowing difficulties and s smaller head size. Infantile spasms are common before the age of 2. Intractable epilepsy is common as well. Due to this condition lily also has cerebral palsy and respiratory problems along with all the developmental delays. As of yet we are not sure if she will ever walk, talk or live a long life like others.

So far lily is doing really well and is attending Birmingham children's hospital regularly. We do however require special equipment for lily such as bath aids and a bee chair.
Lily is under peadiatricians, neurologists, occupational therapy, Physio therapy, speech therapy, respiratory specialists, Audiology and ophthalmologist. We also have the help of our health visitor and family support worker. We have recently asked our local MP to help us too.

We are raising money for lily and any other children with pachygyria, cerebral palsy, respiratory problems and rare diseases and any donations would be wonderful and much appreciated.

all money raised will be split between cerebra (charity number: 1089812) and Lily's fund for items she will need in the future.