Yes! Bailey-rose had mitochondrial disease but this did not define her, she was and is the strongest human being I know. Bailey-rose had a type of mitochondrial disease called Cyto chrome oxidase deficiency and I know that those four words mean nothing too you, because at one point they meant absolutely nothing to me.

In 2012 Bailey-rose came into the world on the 8th March, she was tiny and perfect. The first six weeks of her life were spent in the NICU at Liverpool Womens hospital, where she was born. We had no idea what the future had in store for us at this point. Whilst there, surgeons took a muscle and a skin biopsy to determine Bailey-roses' diagnosis.

When she came home we had around 4 weeks or so of being blissfully unaware of the world around us enjoying our new baby, until we had to take her to Alder Hey because she had a cold. She became so poorly, but in true Bailey-rose style pulled through but this is when we were given her diagnosis, Cyto chrome oxidase deficiency complex 4 in the RMND1 gene. The news was confusing, we went home shortly after to try and take in this news.

Fast forward to Bailey-rose being 6 months of age. We had had a few months of normal life, the regular trials and tribulations of figuring out how to be parents and parent together, how to be an adult on my part and life was paused again. Bailey-rose wasnt feeding very well so we ended up in the Royal Manchester Childrens hospital (we had moved closer to home by this point). We were given more news. Due to the mitochondrial disease Bailey-rose had kidney failure. She had to be put on a special milk and due to poor feeding an NG (Nasogastric tube) tube was fitted, which was pulled out by her on a weekly basis.

On New Years Eve 2012 we went to visit family back in Liverpool. Bailey-rose caught a tummy bug and we ended up in Alder Hey for around 3 weeks. This is when she had her 2nd surgery to have a permanent feeding tube put into her tummy. We returned home to Manchester shortly after.

Although Bailey-rose was in and out of hospital for the next few years, with seizures and sickness, life was really good we had a sense of normality, Bailey-rose started school and gained a brother and a sister and as a family of five we were allowed to live in our own little bubble. Life wasnt always plain sailing, there were hiccups along the way but we were happy and more importantly Bailey-rose was thriving.

Daily life was all about routine and living that day and never worrying about tomorrow. She had a strict medication and feeding regime which I sometimes struggled to stick to (Im not a robot). Things were calm.

In early 2016 Bailey-rose scared us properly for the first time, she became acidotic, and this meant that for some unknown reason her lactic acid in her blood would get really high and her sodium bicarbonate levels would be low so she needed an infusion via IV (intravenous) to help correct this, but due to the amount of times she had to have cannulas and other complications it was extremely difficult to find veins. They had to drill into her bones to get the fluid into her body. It was at this point we had discussions about fitting a permanent line into here body, it would sit just under her skin so that Doctors could have access as an when they needed it.

Bailey-rose ended up having 3 surgeries to get her central line because two of them failed, they had to be replaced. The third and final one was successful and as a family could take collective sigh of relief for a little while. With her ongoing kidney failure and regular bouts of sickness we were not out of the woods.

Over the next 2 years Bailey-rose had several hospital stays due to lactic acidosis but she bounced back as always and enjoyed school so much. She made friends and had her favourites, Im not going to lie so did I, She progressed with her coordination and would get your attention by whacking you in the face if you were close enough and she blossomed into a beautiful little girl, she was growing up. We had lovely stays at Francis House Childrens Hospice which became our safe haven and we made memories.

We had adaptations done to our house to make caring for her a little easier, she was getting so big, and needed so much more equipment. The equipment is just something you dont think about if you never came across looking after someone with complex needs. The feeding bottles, the tubes, syringes, pads, medication, wheelchair, and specialised seating chair the list goes on. We had carers in our home to help with her strict routine of feeding and medication again Im not a robot.

One day in December 2018 after a long day at school Bailey-rose was shattered and I mean absolutely cream crackered so tired that she pretty much napped till bedtime and slept the whole night through, which was a rarity for her believe me! I thought nothing of it. Its just Mito rearing its ugly head and let her rest. The next day I sent her to school and she came back on transport absolutely zonked. Thats when we decided she needed to go up to Tameside, where by this point she had open access and was a pead royal. We phoned an ambulance which is not something we did often, we would usually make our own way there.

We arrived at the hospital and I got the sense that we were just double checking her bloods making sure she was ok and we would be home by morning but I was so very wrong.

Bailey-rose had contracted sepsis. This was something we had never dealt with before and not something that she could overcome. The antibiotics for sepsis are strong and her poorly kidneys could not cope with the big job they were given.

We spent the whole of December in Tameside Hospital. We had 2 days at home and then we went to Francis House it wasnt like our other visits and we knew that we would not be taking Bailey-rose home with us. We made some more memories, Daddy made us New Years Day dinner and all 5 of us sat round a big table together. I gave Bailey-rose a bath which she really enjoyed.

On the 2nd of January 2019 Bailey-rose passed away with her mummy and daddy right by her side.

If you knew Bailey-rose, you would know that she had many faces to tell you how she felt for example her cats bum face as one of her favourite people would say. she would pull this face when something disgusted her or you gave her something to taste on her tongue that she did not like. Her smile its contagious. Last year her two front teeth fell out and it was another milestone we hit, she looked even more beautiful, her grumpy face you would get if you tried to brush her hair, she would completely fall out with me for a good while afterwards by avoiding eye contact to show she was especially mad. She had a calming effect if you sad or angry and you sit by her everything just melted away and she became your soul focus. She is home. She is where you feel safe