For anyone that’s not familiar with Mylah Rose’s story;

Mylah Rose Fry was born on the 30th March 2017 weighing a tiny 2.2 kilos (4lb 13oz). During my pregnancy, medical professionals discovered that Mylah had a right sided tummy. This is something that can ‘just happen’ without explanation and unless Mylah was puking green fluid when she was born there wouldn’t be a problem.

However, after Mylah’s birth tests discovered she had a right sided tummy, no spleen, a midline liver and an interrupted IVC with azygous continuation. For anyone that doesn’t understand medical talk her insides were all muddled up including some of her arteries and veins. She didn’t have the main vein in her heart but because another vein was working in its place this wasn’t a problem. The spleen is part of the immune system so essentially without it she would be more prone to picking up infections.. because of this she was on life long medication to try and prevent these infections from affecting her.

After many tests and 18 hours under the UV lamp for jaundice Mylah was sent home at 5 days old. Mylah spent the first 11 weeks of her life at home with her Granny, Grandad, Uncle Jack and her mummy. These weeks were spent exploring the big wide world... beach walks, shopping, walks in the forest, train journeys, bus rides, and even her first holiday to Devon at 8 weeks old!

When Mylah was 11 weeks old she was taken into Southampton General hospital with a very big and swollen belly. Mylah would open her bowels very regularly (sometimes too regularly) and because she hadn’t been It was presumed she was a little bunged up.

After many tests she was transferred to Kings College Hospital where she was diagnosed with biliary atresia- a rare childhood liver disease. I was told that it’s very rare children are diagnosed as late as she was (11 weeks 5 days) and that 12 weeks of age is the cut off to have the Kasai procedure. The liver has ducts, so that the bile it produces can drain into the intestine and help with digestion of food. If these ducts are blocked, the Kasai procedure is a way to surgically bypass them and prevent liver damage.

After ultrasounds, MRI’s and many other tests they realised Mylah’s liver was already too damaged and she wouldn’t benefit from having the surgery. The only way Mylah would have a chance at survival now was for her to have a liver transplant.

After two weeks she was assessed, put on the transplant list and transferred back to Southampton where she started waiting for her gift. Days turned into weeks and we were becoming more desperate for a new liver. She was becoming sicker by the day and her liver becoming so damaged it wasn’t functioning very well at all. She would pick up infection after infection and was colonised with rhino virus for the whole 7 month wait. She had portal hypertension so her varicies would cause internal bleeding and let me tell you there is nothing scarier than seeing your baby bleeding from her bottom and vomiting blood. Each time this would happen she would be blue lighted to Kings College Hospital in London where they would go inside and inject the varicies to stop the bleeding. This often landed Mylah a few days in intensive care.

Mylah became dependant on a feeding tube and TPN (being fed through her veins) because she became so unwell and was always so bloated but she needed as much nutrition as she could get. It was then discovered Mylah got a blood clot in her lung so she was put onto injections twice a day to try and clear it. After a long and difficult 7 months Mylah was given a second chance at life with a new liver.. 9 weeks passed after a slow recovery and after some liver rejection and the findings of the CMV infection Mylah was well enough to be transferred back to Southampton.

Over the next few months Mylah completely thrived and her once tired and yellow body changed into a mischevious, energetic one full of life. After lots of hard work and practice she had learned to eat and found a huge love of crisps, frazzles being her favourite! She learnt to shake her head and wave which she used many times to trick the nurses into her room for the attention she so loved. She also learnt to sit up and managed to master falling asleep every single time she was supposed to be having tummy time! Aside from her mischievous ways Mylah absolutely loved getting as messy as possible and having fun! She found a way with her cheekiness to persuade the play specialist into having messy play sessions at least twice a week which were her favourite ! Whether she was painting with her feet or bathing in jelly she absolutely loved every moment of muck and would have a whole crowd of doctors and nurses by her door enjoying it with her!

On the odd occasion Mylah would have day releases from the hospital where she spent time over the Ronald McDonald house. She met therapy dogs, went to the jungle party where she had a cute bunny face paint and also enjoyed the Easter party where she spent most of her time eating Pringles!

For Mylah’s first birthday she was allowed a whole day out of the hospital where she spent the day over the Ronald McDonald house for her party ! She had an amazing day surrounded by her family and enjoyed spending quality time with her cousins that she couldn’t always see. Although Mylah was doing so well and achieving things she couldn’t do before transplant she was still desperately trying to fight off the CMV infection which was proving difficult.

In May Mylah had a sudden requirement for oxygen and we discovered that the CMV infection was starting to affect her respiratory tract. Despite this she was still full of life and cheekiness laughing and smiling through every hurdle. She was moved to the high dependency unit where she spent 5 days before she was moved down to the intensive care unit. Mylah being her usual mischevious self she had a frazzle in one hand, was giving a slight wave with the other and had a huge smile plastered on her face had the consultants once again puzzled as to why she was there.

Over the next few days and with Mylah picking up more infections it became apparent Mylah was very sick. Mylah was ventilated on the 4th June and 11 days later put onto ecmo life support. She was transferred to Great Ormond Street hospital where things went from bad to worse. Mylah’s lungs became so sick that they were completely consolidated and she was unable to breathe herself.

After many discussions and lung recruitment techniques it was agreed amongst many different teams and hospitals that Mylah would never recover and her life support would have to be discontinued.

We decided to get Mylah christened and her final days were spent doing the things she enjoyed. Messy play was a must and with her mummy and granny she created lots of memories using her hand and foot prints. She listened to her favourite songs and mummy was even able to get into bed with her for a cuddle!

August the 27th came and Mylah had her last ever X Ray. It was still a complete white out and there was no air in sight. This being said it was decided to move Mylah into her own cubicle where her family could come and spend some precious time with her.

After around 10 hours of singing to Mylah, playing music and telling her how much she meant to everybody, Mylah was allowed to have a proper cuddle with her mummy after a long and tedious 12 week wait ! She snuggled up in mummy’s arms, holding her aunties hand whilst her other aunties, granny, grandad and godmother were surrounding her.

She opened her eyes as if to acknowledge us all and at 5:20am she passed away peacefully.

Since the loss of my daughter I have received very little professional help. It’s an extremely difficult time and with no help or support it’s made even harder not knowing what to do. I have set up this foundation to fundraise as much as possible with the hope to help as many grieving families like myself in the future to get the help they need to deal with such an awful time in their lives. We have raised a huge amount already (yet to be re calculated) and I’d like to continue smashing it in memory of my beautiful girl 💖 please help me to help them 😁💖

Thank you