Josie Rae, 2, has been diagnosed with a rare genetic condition called CDKL5
A Northern Irish mum says she is doing all that she can to ensure her daughter has the best start in life after being diagnosed with a rare genetic condition that causes seizures when she sleeps.
Read more: Belfast family's special tribute to remember eight-year-old after his passing 12 months agoSpeaking to Belfast Live, Josie Rae's worried mum Katherine Duncan Brandao said that while she is thankful that her daughter has received a diagnosis, there are very few relevant treatments available for her in Northern Ireland and she is having to look elsewhere in order to find the help and support that Josie Rae needs.
"Because of her condition, at the moment she struggles to do a lot of things that other children her age are able to do, such as walking, running and sitting up straight and this is alongside her seizures, although thankful they are not as frequent as when she was a baby. "My husband is from Brazil and I lived there for seven years and we have found a multidisciplinary clinic in São Paulo, that will be able to do intensive work with Josie Rae and we are preparing to be there for six weeks. Josie will receive treatment 5 days a week from a team of physios, OT, speech & Language & other therapists experienced in working with neuro diverse children.
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