Fearne is aged 3 from New Brighton. She was born in December 2019 mere months before Covid-19 hit and the UK went into lockdown for the first time. Through Whole Genome Sequencing (WGS) Fearne has very recently received a diagnosis of a neurodevelopment disorder caused by a variation to gene GABBR2. Because of this she has significant Global Development Delay, low muscle tone and vision impairment all of which bring their own complications.

Fearne was healthy at birth, passing all newborn screening but as she approached 3 months we grew concerned that her vision wasn't as it should be, she wasn't really fixing and following objects or reaching out for things. I mentioned my concerns to a health visitor and from here our lives changed irreversibly. This was the first of many referrals for her.

At her first optometrist appointment we were told that Fearne's lack of vision was likely to be delayed visual maturation and we could expect it to have improve. As time progressed it became clear that this was not the case.

In 2020 Fearne had an MRI and microarray blood tests, all returning normal results, leaving us no closer to understanding why Fearne was so significantly delayed in all areas. In April 2021 Fearne saw a neurologist who felt the cause was likely genetic and put her forward for WGS. In January 2023 we finally received Fearne's diagnosis confirmed as a rare neurodevelopment disorder. The disorder is very rare and not a lot is known about it, meaning Fearne's future is quite unknown.

Fearne is supported by NHS physio, occupational and speech and language therapists and also local authority vision support. We are incredibly grateful for this help but feel that in order for Fearne to achieve her potential she needs more regular and varied therapy.

We are hoping to help Just4Children raise funds to access pioneering therapies and help her be all she can be.

Fearne is such a happy little girl and makes us so proud. She is a fighter and we know given the opportunity she will not stop trying.

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