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I think many of you may know of my granddaughter Orlaith's very rare genetic disease that was diagnosed at the end of last year through genome sequencing. Only 40 known cases in the world so far. She has a neurodevelopmental disorder caused by a gene mutation in a gene called PPP3ca She is now a delightful two and a half year old but her condition means that she needs many therapies to help her reach her potential. Sadly the NHS are unable to provide these therapies in a timely, consistent way (or at all) so it's been necessary to use the private sector to enable the best possible outcome for her future. Emma and Connor have been self funding but this has now become unmanageable for them so they've set up fundraising to help provide for Orlaith's ongoing medical needs. She started with physiotherapy at the Footsteps foundation last year and their expertise together with Orlaith's determination resulted in her taking her first steps at 23months. Continuing physio is ongoing. Speech and language therapy has just begun as her hypotonia means her facial muscles make it very difficult for her to form correct sounds for learning to talk. If you have an Instagram account search for @fulfillingorlaithspotential

to follow her progress