Anna Lewis passed away 10 years ago - it felt only right that we should mark the anniversary by doing something together to raise money in Anna’s memory – and whilst we have an array of skills between us the one thing we can all do is walk. So we are going to spend the best part of a day walking 35 km from Anna’s grave in Brasted to Great Ormond Street hospital on the 2nd April. Here’s why...

The seven of us have been there for each other for the last 25 years. No matter where we have been in the world over those years or how long it has been since we have seen or spoken to each other put us in a room together (or on a Zoom call in lockdown) and it doesn’t take more than a few seconds before we are laughing like we were with each other just yesterday. A journey from student life in Durham to where we find ourselves today has had those moments of uncontrollable laughter, adventures, and tears that we’re certain most close groups of friends have had. And what comes with that is being there for each other through thick and thin, dropping everything if one of us needs us to and riding those storms. We are family. To all of our children we are their Durham Aunties.

Anna is Jess and David’s second baby, a little sister for Holly. The seventh baby born to the group of us, the first of what we referred to as the second wave and since Anna a further seven have followed. What we were never prepared for was for one of them to leave us. 

Jess was on the other side of the world embarking on a new adventure and we heard that her happy healthy baby girl had started to have seizures that the doctors could not get under control. Jess could not have felt further away. Anna was airlifted to Johannesburg, visitor access was horrendously limited, and we still remember the long waits in between receiving any news. After what felt like weeks and a gruelling journey Anna eventually arrived at Great Ormond Street Hospital. We could visit. We could attempt to be a distraction for a few hours. But whilst the doctors struggled to establish what the underlying condition was, we didn’t have any answers and we couldn’t make any promises that it would all be OK. Jess and David received the news that no parents should ever hear; the condition that Anna had been diagnosed with had no cure. Anna passed away on 1st April 2012 and is buried at Brasted church. 

Anna had Alpers, a Mitochondrial Disease. We had never heard of it. There were no words – we were heartbroken.

Mitochondrial disease, or 'Mito', is the term given to a group of medical disorders caused by mutations in mitochondria, the tiny organelles that are present in nearly every cell in our bodies and which generate about 90% of the energy we need to live. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious and wide-ranging. In Anna's case, her liver and brain were affected.  Tragically there is currently no cure for Mito.

10 years have passed, and little Anna could not be more remembered and loved by her Durham Aunties. There is no rule book on how to support a friend through the loss of a child; we will never understand the pain of that grief. All you can do is be there. Don’t shy away. We talk about Anna, remember the birthdays and anniversaries and we make sure our children remember her; she’s Angel Anna.

Jess and David have been inspirational. For the last 10 years they have tirelessly campaigned to improve awareness for Mitochondrial Diseases and have raised a staggering £356,000 for The Anna Lewis Brighter Future Fund for GOSH research into finding a cure. 

We would be so incredibly touched and grateful if you could spare a few pennies in Anna’s memory.