Suzanne was diagnosed at 3 months old with lissencephaly. We did not have a clue she had this rare condition, we rushed her into hospital because she was having seizures and infantile spasms. We spent many weeks in hospital trying to understand it all, and learning how to cope with giving so much medication to control her seizures as she was having them 24 hours a day.
We have had many admissions to hospital for seizures, many chest infections, having her tonsils out and she had a VNS which is a vagale nerve stimulater. Her VNS has helped to reduce many seizures although she still has many. Suzanne suffers from upper air way respiratory so needs suctioning all the time and nebuliser. Suzanne is wheelchair bound and is unable to hold her head up and sit up so needs a lot of support with this.
Her daily life is very hard for her but she loves school, her family and her sisters and gives us a lovely happy smile, she's a true inspiration to us all, and is a very strong fighter.