Phoebe was born on November 14th 2021.

As many babies Phoebe seemed like a healthy child but as the months went on, we realised Phoebe wasn’t developing as quickly as other children we knew.

We started to notice changes in Phoebe, like getting nystagmus, not being able to support her own weight when sitting down and losing weight.

We were referred to A&E and the tests began to see what was wrong with her. After a few days in hospital and many tests and an MRI we were informed by consultant’s that Phoebe had significant damage to her brain.

We were then referred to guys & St Thomas’s after spending a week in hospital. We met with specialists at the Evelina centre and this is when they said she more than likely has mitochondrial disease( which we have never heard of until this point) Phoebe was only 10 months old.

This is where found out about the lily foundation.

Phoebe was always a happy smiley baby she had the most beautiful smile, but after her first birthday around Christmas time Phoebe started to deteriorate a lot and eventually lost her ability to smile, laugh and even cry which was heart breaking. After a difficult and emotional 8 months from Phoebe’s diagnosis she sadly lost her battle and passed away on May 2nd 2023.

Despite everything Phoebe went through she was so brave and strong, and she brought so much joy to everyone she met.

We have also recently had our genetic results and Phoebe had NDUFAF5 a rare complex disease a form of Leigh’s syndrome(only around 10 recorded cases worldwide)which was passed on by both myself and Amee.

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