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Hi everyone, my name is Lynette, I'm from North London, I have a 7 year old who up until 2 weeks ago didn't have a diagnosis, she has since been diagnosed with a rare condition called kif1a, Lexi is unable to stand or walk due to lone tone, has severe c.v i, global developmental delay, and epilepsy you can find more information about this condition at kif1a.org we have learn it's a neurodegenerative condition and children have passed away very early in their lives. Im still very much in shock with this long awaited diagnosis and would like to connect with other local families to simply have a chat, or receive any advice. Kif1a is only a recently discovered (since 2011) genetic mutation and so far only approximately 30 children worldwide have been diagnosed, we are the 3rd family in the uk, which such a small number it has felt incredable isolating so I would love to make contact with other families more locally. Also any advice on fundraising or raising awareness of kif1a would be appreciated. Thank you ☺❤