Olive is 3 Years Old and is the happiest little girl you could ever meet.

What started in September 2024 as parent concerns regarding Olives lack of walking and developmental delays, then going on to being misdiagnosed and shrugged off by the NHS for a further 9 months. This finally led to further investigations. In June 2025 we discovered Olive had Hip Dysplasia which required urgent surgery. During discussions with our consultant in July 2025 we were advised of some further genetic testing available at Addenbrookes. 4 weeks later we had a diagnosis of a rare genetic condition. HIVEP2-related neurodevelopmental disorder. Olive is one of only a small number of children in the world known to have it.

Olive is a strong little girl. She’s been through more tests, appointments, and unknowns in her short life than most people face in a lifetime, and she’s met every bit of it with resilience that leaves us in awe of her.

Olive receives NHS therapy support, but some of the most specialised care for her condition, including specialist assessments and primitive reflex integration work, is only available privately, much of it through specialists in the US.

Olive is registered with Simon’s Searchlight, an international research program studying rare genetic neurodevelopmental disorders, and we receive quarterly updates on HIVEP2 as it develops.

Now it’s our turn to give back to her, to make sure she has access to everything that could help her thrive. This fundraiser will go directly toward specialist consultations and therapy support that sits outside what the NHS can provide.

This is also the first step in something bigger, Olive’s HIVEP2 Journey, our family’s lifetime goal to raise funds for research and care for children like Olive. Thank you for being part of it from the beginning. 🫒 💛

Follow our journey on Instagram below:

https://www.instagram.com/p/DbT68KuOYhL/?igsh=bHQ2N2txdTRhZGlt&igsi=bHQ2N2txdTRhZGlt