Nina Schiller
Maisie's Auntie Nina is RUNNING A HALF MARATHON
Fundraising for The Lily Foundation
Story
Anyone who knows me knows I am not a runner. I have never been one to don a pair of trainers and hit the pavements for a few hours of fun. So it must have taken something (or someone) special for me to sign up to the London Landmarks Half Marathon in March.
Well you’re right. My beautiful niece Maisie Jane Totten is my inspiration. Maisie was born on June 12th 2018 and she was totally perfect. She brought a light into our lives that will never go out and Noah and Eva loved their baby cousin from the moment they met her.
When Maisie first got ill at the beginning of August it didn't even occur to me that she would end up in intensive care, it all happened so quickly. After a month at the Great Ormond Street Hospital, we were told that our worst nightmares had been confirmed. Maisie was given a terminal diagnosis of Mitochondrial disease, caused by a mutation in her RRM2B gene.
Maisie’s particular version of mitochondrial disease is so rare that she was just the 16th case on record. The disease meant that her body cannot create enough energy to maintain her brain or muscle function and that she would live a very short life.
So Maisie’s mummy and daddy had to make the impossible decision of taking her to a hospice to live out her final few hours in this world
The pain is never ending. Losing Maisie and watching my baby brother and sister-in-law lose their little girl have irreversibly broken my heart. And having lived through that pain I know that a half marathon (even though it is going to hurt loads) will never hurt as much as saying goodbye to my niece forever.
Every 20 minutes a child is born who will develop Mitochondrial Disease by the age of 16. There is no cure and very little treatment and the disease in it's various forms is always debilitating and often life limiting.
So I’m running 13.1 (THIRTEEN POINT ONE) miles to raise money for the Lily Foundation in the hope that I can help stop another family from going through the utter hell we have.
Please sponsor me, anything you can afford. And please keep me in your thoughts as I put on those trainers and run my heart out. I know Maisie will be with me every single step of the way.
