Anyone who knows me knows how much I love my niece and nephew. They fill my life with joy and teach me everything about what's important in this world. So when Maisie Jane Totten arrived into the world on June 12th I was over the moon, another niece for me to give my whole heart to. 

Now I'm obviously biased but Maisie was honestly completely and utterly perfect. Everyone who laid eyes on her, with her full head of silky hair and the brightest eyes you've ever seen, fell in love with her. She was the star of the show.

When she first got ill at the beginning of August it didn't even occur to me that she would end up in intensive care, babies get sick all the time right? I assumed it would be a tough few days but that they'd give her some medicine and Simon and Sophie would be able to go back to their home they'd spent 9 months preparing for their baby girl. But no. 

The month we spent with Maisie in intensive care at Great Ormond Street was a gift; we were told before they transferred her there that she might not make the journey but the tough little cookie fought hard to give us a whole month of cuddles and giggles. It was the saddest and happiest 30 days you could ever imagine. 

After lots of tests and an agonising wait, Maisie was given a terminal diagnosis of Mitochondrial disease, caused by a mutation in her RRM2B gene. So rare that she was just the 16th case on record. The disease means that her body cannot create enough energy to maintain her brain or muscle function and that she would live a very short life. My brother and sister-in-law then had to make the impossible decision of whether to take Maisie home or to a hospice to live out her final days. They agreed on hospice and 4 days later held Maisie in their arms as she lived her last few hours, off the life support machine. 

The pain is constant. It is never ending. The injustice of having to watch Maisie die and there being nothing any of us could do about it will live with us all forever.

Simon and Sophie are the bravest, strongest people I know - it explains why Maisie was so brave and strong. I can't bear the idea that anyone will ever have to go through what they have been through and although running the London marathon in 2018 was excruciating, i know that nothing will ever hurt as much as losing Maisie. So if i can raise even a little bit of money to put towards the research for a cure or even just a treatment, then I will run a thousand marathons. 

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.

Sorry that I am going to be begging you all for money and banging on about how much my knees hurt again. Thank you so much for everyone who sponsored me last year, I really didn't want to ever ask you to do so again but the universe had other plans.