Canavan disease is rare genetic neurological disorder characterized by the spongy degeneration of the white matter in the brain. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses. The life expectancy for people with Canavan disease varies. Most people with the neonatal form live only into childhood.
So, Olivia-May has the chance to go to Dayton Children’s Hospital in America for Gene Therapy, which will enable her to do some things she cannot do now and will also give her longer with us.
All of her information has now been sent off already along with her MRI rand other test results. So, it’s just the waiting game to get the dates.
Olivia-May is fully disabled and only has a life expectancy of 10 years or less. She is only the 11th child in the UK to have this. She does deserves the best. She always smiles through everything life has thrown her way.
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