In the picture above, you can see me meeting the warrior Sophia, the beautiful little girl of my close friends Rob and Tasha. Within just a few weeks of this however, she sadly passed away at just 3 months old after putting up the biggest fight you can imagine against POLG.

POLG is a life limiting genetic condition that affects the mitochondria in our body’s cells and life expectancy ranges from 3 months to 12 years. It is very little known by the general public and there so far has been limited research or information to guide treatment approaches or even symptom management.

Rob and Tasha have been a true inspiration from the day Sophia was born and her symptoms were noted, all the way through her battle and now in her memory they are tireless in their efforts to honour Sophia’s legacy by improving medical knowledge around POLG and give families facing this devastating diagnosis hope for the future.

I have been lucky enough to be invited to join them and others to complete the ‘3 Peaks’ challenge; a task involving climbing each of highest mountains in Scotland, England and Wales to help raise awareness and funding with ‘The Noah Jordan Foundation’ (TNJF). It involves over 37km of hiking up and down Ben Nevis, Scarfell Pike and Snowdon, 740km of driving in between and we aim to do it within 24 hours.

All proceeds from this challenge will go towards ‘The Noah Jordan Foundation’ who are raising £100,000 to fund a second three year PhD researching POLG mitochondrial disease. TNJF has already funded its first PhD, established in memory of Noah, Sophia and other children lost to this disease, which is now underway at Newcastle University.

Every donation brings hope to families facing this disease and accelerates vital research, helping to protect future children and families from the heartbreak of POLG.

If you can spare anything at all, it really will make a meaningful and measurable difference in the fight against POLG and will help remember a little girl taken far far too soon.