Millie's story...

Our beautiful baby girl Millie was born on the 12th January this year.After only a few days of being home Millie was rushed into our local hospital St Helier with breathing problems.She was diagnosed with Pneumonia and after a week of treatment she was finally allowed back home.While there we noticed that she hardly moved and had little or no tone to her body.She would not feed,was always sick and struggled to put on weight.

Millie refused any affection that we gave her and was always sad and seemed in a lot of pain.After constant trips backwards and forwards to the doctors she was readmitted back into hospital and after numerous tests they found that she had an abnormality in her blood.We were transferred to Evelina's childrens hospital where they carried out a series of Metabolic tests on her.Millie's Consultant felt that she showed signs of the rare metabolic disorder Mitochondrial disease.Mitochondrial disease is an energy disorder and her lack of tone,movement and development problems were classic examples of this illness.

Sadly we were told that this disorder is incurable and life limiting.The only thing they could do medically was to give her symptom management care.She was given a tracheostomy to give her a clear airway and eliminate any obvious respiratory problems and a gastrostomy in her stomach to ensure she was continuosly fed safely and at a rate her body could take in the hope that she could put on weight.We were told that despite the bad outlook this disease could have,it can affect all children differently.In some cases kids could overcome the odds and surpass the expectations of doctors and parents alike and have some sort of quality of life for any given amount of time.We could only hope that Millie could be in the same bracket as these cases but due to the harsh unpredictability of this illness know one could ever be sure what the future could hold for her only time could tell.

Millie showed what a fighter and strong little girl she was all the way through but unfortunately her condition slowly got worse in time.She began to have severe nerve cramps called Dystonia and suffered various episodes of Epileptic seizures throughout the day.Despite various levels of medication both forms proved to be hard to control.Soon her heart rate began to fluctuate and her breathing problems returned ,further signs that her illness had begun to take control.

Our beautiful baby girl sadly passed away peacefully on the 30th July 2012.

Despite all the problems she had, she proved to be a very popular girl on the ward.Nurses would fight to look after her even though they knew that they would be kept on their toes all day.Those who didnt look after her would still come and visit her in the hope they could have a rare cuddle,smile,tickle or give her beautiful red hair a head massage.Millie was always one of the best dressed on the ward.She was known as the pink princess as her mummy made sure she had enough pink in her wardrobe to choose from.

Not only did she touch our hearts she touched everyone who came into contact with her.Tracy and i are incredibly proud of our little girl,even though she was so poorly she continued to amaze us with the big personality that she possessed.She was tough,determined,stubborn yet at times so sweet and beautiful in the face of it all.Millie was truly and inspiration to us both.

Although she is not with us anymore we both feel that a donation to the Lily Foundation would be a great gift instead of flowers in Millie's memory as the money would be made available into further research into this complicated life limiting illness.Millie had many tests including blood tests and muscle biopsys yet all have come back negative.The only test to show evidence of the condition in Millie is an MRI,and her general overall tone and lack of development.All other tests either Metabolic or Genetic could take years to reach us,that is why funding is essential to allow further research into a disease that has had such an affect on both our lives.

We would like to thank the amazing nurses,doctors and everyone else involved in Millie's care who not only cared for our baby girl but looked after us as a family so well during such a difficult time.We will never forget you all.

We would also like to thank our amazing family and friends for their love and support during this time.We are so gratetful to have you in our lives.

Our beautiful daughter Millie and Sam's little sister he calls Millie Moo was only with us for 6 months but will be in our hearts forever.

Rest in peace our angel,gone but never forgotten.

Chris, Tracy, Sam and Jack Coombes