References in periodicals archive ?
Sara and Daniel are also trying to raise awareness of their little boy's condition, and came second in the American Brain Foundation's Neuro Film Festival with a film about Finley's life with PVNH.
Sara said: "Finley is the centre's first PVNH patient and it's so rare that they've never treated anyone with it before."
His mum Sara, 34, has made contact with other families affected by PVNH after discovering support and awareness groups on Facebook.
The first World PVNH Support & Awareness Day, organised by a mum from Canada to honour her late daughter, took place yesterday.
Finley was finally diagnosed with PVNH - also known as grey matter heterotopia - in September last year after an MRI scan.
Earlier genetic tests drew a blank but scientists in Oxford are about to painstakingly go through the DNA of Finley, Sara and dad Daniel in a bid to find out why he has PVNH, a process that could take months.
Sara, who is also mum to Noah, six months - who does not have PVNH - said: "It means that when Finley's brain sends signals to his body sometimes they're blocked.
Acronyms browser ?
Full browser ?