Lillyanna Rose Dove was born to me and Kyle on 22nd December 2018, it was love at first sight, we had never felt such love before! From the first moments of Lillyannas life we knew that something was not right. There was Meconium in my waters when they broke, plus Lillyanna had swallowed Meconium during the labour so was monitored throughout the labour. Lillyanna was born at 4.59pm on the Saturday afternoon she was blue, floppy, did not cry and was unable to latch on. We were assured all was fine but after a few hours we knew this wasnt the case and so Lillyanna was taken to the Neonatal Until. She spent 37 days in hospital having so many tests to try to find out what was wrong with her and what had caused her problems. Please follow Lillyannas story on https://tubiedove.co.uk

On the 26th February 2020 we had an appointment at Evelina Childrens Hospital. We thought it was just an update however we were told that they had found what was causing Lillyannas problems, Mitochondrial Disease. This was the first time we had ever heard of the disease and it came as a massive shock. We had longed to find out what was causing Lillyannas problems but we were devastated when we were told it was Mitochondrial Disease. When we received the diagnosis we were put in touch with a nearby charity, coincidentally called The Lily Foundation, which was founded in the memory of the founders daughter Lily, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today. There is no cure for this disease which is for many, debilitating and life limiting.

A year had passed since the diagnosis and we were still no clearer which syndrome was connected to Lillyanna until finally we were able to have a Zoom call in February 2021 with the Metabolic team at Evelina Childrens Hospital. Currently scientists have compared Lillyannas genes to those syndromes known in the Mito family, and there has been no match. They now believe that Lillyanna may have another syndrome/disease which is causing her Mitochondria DNA to not perform as they should be but, to date, they have no idea what it is. She is unique. This news has also hit us hard as we thought all we had to contend with was one disease, not a possibility of two. Despite all of this, Lillyanna is so strong and is continually making us extremely proud! After her 2nd birthday she sat up for the first time by herself, which is something we thought would possibly not happen, but she proved us all wrong! Now she is an absolute expert getting herself up from lying to sitting and then back again! She is making great progress with her hand and eye coordination, she is now able to remove cups from inside of each other and then put back with just a little help from myself! She brings us so much joy and makes us laugh so much! She amazes us that she can watch Frozens Let it go on repeat on her iPad, she gets so excited she looks like she is conducting an orchestra with her arms and hands! Lillyanna also loves books being read to her with Mummy doing all the different characters whilst Lillyanna loves turning the pages back and forth! Thankfully, I have memorised all the words to her books otherwise it would take all day to read them, what with Lillyanna enthusiastically turning the pages before I have managed to finish reading the page!

We have set up this team page for anyone who would like to do a fundraiser for The Lily Foundation through our love and inspiration of our lovely daughter Lillyanna. We are forever grateful to everyone who has offered us support and love through our journey so far.