A Day in a Life With Mitochondrial Disease

This month Spabreaks.com is launching our Just For Today campaign to reward five unsung heros from the Lily Foundation a day off with a spa day for two and a hamper of goodies . Here the Lily Foundation’s founder Liz Curtis explains all about Mitochondrial Disease, the illness which saw her six month old daughter pass away and spurred the formation of the foundation…

I found out my daughter had Mitochondrial Disease when…

She was seven weeks old.

Her symptoms were…

Failure to thrive, she was tiny. She started to have episodes where she would stop breathing.

The impact on our daily life…

Was huge. Lily was rushed to hospital following her first seizure. We were here for 10 days, her condition deteriorated and she was rushed to intensive care. After five days on life support, Lily was diagnosed with a Mitochondrial Disease. We were told there was no cure and no treatment and that Lily was going to die. Her prognosis was just days.

The biggest obstacles were…

The lack of information about Mitochondrial Disease and total deficit of support networks for families or parents like us.

The most positive thing I learned through that time was…

I knew that there was nothing I could do to make Lily better. All we could do was to love her, cuddle her and be there as a family. I learned that I wanted to change things so that other families would have a charity to turn to, to talk to someone, to raise money for.

Other people can help by…

Learning about Mitochondrial Disease and the devastating effects it has on babies, children, teenagers, young adults and adults. To understand that there is no treatment to take away the excruciating pain these babies and children deal with. And then maybe, if inspired, get involved and help us to make a difference.

The best advice anyone has given me is…

The saying “Grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference”.

My advice to anyone who has just received a diagnosis is…

To live life to the full and enjoy every day

The thing that makes me feel on top of the world is…

Tricky, but i am very proud of what we have achieved here at The Lily Foundation. I am pleased that we have created a place for people to come, to speak to other people, and hopefully make them not feel as alone as we did.