Ivy and Olive will both be walking/running and Olive wheeling through the butterfly run for The Lilly foundation!

Please donate if you can the girls are very excited to be raising money for such a important charity, we've written olives story below for you all to read.

When olive was born she completed our family joining her big sister Ivy-rose.

Olive was very unsettled baby then at 12 weeks old she had bronchiolitis from them on she had a chest infection every two weeks.

Olive never hit a milestone at the average age then when she was around 13 months old she regressed and couldn't sit with no support.

From then on olive declined health wise which resulted in to being admitted in to hospital for a long period of time. While there olive had endless test and procedures to try and find diagnosis. While having this done olive had a central line placed so she could have TPN to try and build her up, olive also had a Ng tube placed.

After serval tests we did get told that they thought it was Mitochondrial disease but we would have to wait for the genetic testing results.

6 months later it was confirmed that olive had Mitochondrial disease and a partial chromosome deletion this was a huge shock to us as a family.

It hurts us deeply to think what the future will hold for olive.

It's been hard 3 years since olives diagnosis, with lots of hospital stays and continued new diagnosis.

Olive has a unsafe swallow so she is completely peg fed.

Her mobility has declined over the last 3 years she depends on her supportive pushchair as she can only walk few minutes without being tired.

Olive has hyper mobility, hypotonia, no core strength and low muscle tone.

In 2024 we went to our first lilly weekend and was blown away by the support and the amazing opportunities that the lilly foundation give to people with this awful disease they also support parents and siblings. This is why we would love to fundraise as much as we can to put in to research to continue to help everyone who is suffering with Mitochondrial disease.

Thank you for your time reading olive story and please if you can donate to help with the lilly foundation.

Love from

Chris Hayley ivy-rose and olive-grace

The Lily Foundation are proud to be joining "The Butterfly Run" for the third year running. This is a fully accessible event organised by Cure EB, taking place on Sunday 5th October at the Queen Elizabeth Olympic Park in London. This is a great opportunity to shine a spotlight on mitochondrial disease and the wider rare disease community.

Butterfly Run London is about people of all ages and abilities taking part and challenging themselves to run, walk or wheel a 1k, 5k or 10k race.

I'm so looking forward to being part of the Team for 2025.

Please support me at this wonderful event and help me help The Lily Foundation beat mito and raise much needed awareness. Thank you!