Sophie Totten
Sophie's, Jane's and Amy's London Landmarks Half Marathon 2019 page
Fundraising for The Lily Foundation
Story
Maisie is the strongest person we have ever met and we couldn’t be more proud of her.
Maisie was born on 12th June 2018 and we were extremely happy, beyond words. She was perfect!
Shortly after this Maisie was admitted to hospital at just under 2 months old. At just under 3 months old, after being in GOSH for a month she lost her fight to this horrible, cruel, heart breaking disease. She fought every day in hospital and everyday put a smile on our faces. Maisie had mitochondrial disease, more specifically the gene defect RRM2B.
Maisie is only the 16th recorded case of this specific gene defect in the world!
Mitochondrial disease does not have a cure. The Lily Foundation have given support to us and are a driving force behind doing research and studies to find a cure and what treatments can be given.
For the three of us who do not usually do any running (apart from a bit on the netball court), there is a huge amount of fitness and exercise involved. It is going to be extremely hard, painful and emotional for us but it is nothing compared to what Maisie went through.
Sophie (Maisie’s mummy) – Maisie was and is my world. All day every day I think about her and love her. Maisie means the world to me and I couldn’t be more proud to be Maisie’s mummy. I hope every day she is proud of me.
I want her to look down on me on 24th March 2019 with that cheeky smile on her face and say “that’s my mummy running and I love her”.
Jane (Maisie’s nanny) – Maisie, my beautiful granddaughter. She lit our lives up for such a short time but her memory and my love for her will live on forever. I miss her so much my heart aches.
Those of you who know me, know that I am not a runner. On March 24th I will run, I will run for my beautiful Maisie.
Please help us raise lots of money for #TeamMaisie and The Lily Foundation. Thank you so much for your support. Jane xxx
We are raising money for Team Maisie, to help them to support The Lily Foundation, the UKs leading Mitochondrial Disease charity.The Lily Foundation supports families of children that suffer from mitochondrial disorders and leads the way in searching for cures. Everyday a child is born in the UK who will develop Mitochondrial Disease, a life limiting genetic condition that Maisie was born with.With your support, in her memory we can make sure no family has to say goodbye to their child and go through the nightmare that Maisie's family have.
