Team Olive
When Olive was born, she completed our family, joining her big sister Ivy-Rose. Olive was a very unsettled baby, then at 12 weeks old she had bronchiolitis and from then on, she had a chest infection every two weeks. She never hit a milestone at the average age and when she was around 13 months old, she regressed and couldn’t sit without any support.
From then on Olive’s health declined which resulted in her being admitted to hospital for a long period of time. While there, Olive had endless tests and procedures to try and find a diagnosis. While having this done she had a central line placed so she could have TPN to try and build her up, and she also had an NG tube placed. After several tests we did get told that they thought it was mitochondrial disease, but we would have to wait for the genetic testing results.
Six 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, and it hurts us deeply to think what the future will hold for Olive.
It’s been a hard three years since her diagnosis, with lots of hospital stays and continued new diagnoses. She has an unsafe swallow so is completely PEG fed. Her mobility has declined over the last three years, and she now depends on her supportive pushchair as she can only walk a few minutes without becoming tired. Olive also has hypermobility, hypotonia, no core strength and low muscle tone.
In 2024 we went to our first Lily weekend and were blown away by the support and the amazing opportunities that The Lily 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 into research to continue to help everyone who is suffering with mitochondrial disease.
Even with what Olive goes through daily she has a beautiful smile and is always making us laugh. Thank you for taking your time reading her story and please, if you can, donate or even set up your own fundraising page to help The Lily Foundation.
How to support Team Olive
Olive’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
