Lily's Story

A baby with a tube from their nose, asleep

Lily was just five-months-old when she died in January of a rare deficiency disorder that couldn’t be cured. “From the minute she was born, Lily fought for her life.

“When she was three-days-old, she became very ill and was blue lighted to Manchester's St Mary’s Neonatal Intensive Care Unit for a suspected metabolic condition. This was the beginning of a tough journey for Lily - one that she fought so bravely.

“After many tests which produced no answers, Lily continued to improve and baffle specialists, so we were allowed home whilst they conducted genetic tests.

“Two months later, Lily was diagnosed with Mitochondrial disease, specifically Pyruvate Dehydrogenase Deficiency complex. We were given the devastating news that Lily had a severe case of the life-limiting and progressive condition. Only a few hundred cases have been diagnosed worldwide and Lily had a new variant not seen before. No one knew what the future held. We were terrified.

“Just a couple of weeks after her diagnosis, Lily was taken ill again and was placed on a ventilator at Nottingham Paediatric Intensive Care Unit where we were told more life shattering news that Lily may only have hours, or days, to live once the ventilator was removed. But Lily being a little fighter proved everyone wrong.

“We were transferred to Rainbows from ICU for a 10-night stay. We didn’t even really know what Rainbows did. We thought we were taking our baby somewhere to die but it was the most incredible place and we are so glad we got the chance to go.

“We were so exhausted when we arrived, but we were made to feel so welcome and we didn’t have to think about anything other than the three of us and spending quality time together. We were our own little bubble.

“Rainbows was somewhere we felt protected and looked after; not just Lily but all of us. It was about us having time as a family.

"We got to swim in the Hydrotherapy Pool, which relaxed Lily so much as her muscles were always tight, and we made things in the Arts and Crafts Room; things we will be able to keep and treasure forever. Without Rainbows, we would never have had that. Nothing we can say can thank Rainbows enough.

“Although we were scared to leave Rainbows and the professional support for Lily, we felt so much stronger to deal with everything, Rainbows gave us that confidence. We got home for Christmas and after a couple of blissful months and lots of cuddles, Lily decided one morning that she had no energy left to fight the condition and passed away leaving the biggest hole in our family. We went back to Rainbows and Lily spent time in one of the special bedrooms.

“Lily has brought so much joy into our lives and shown us that the most important thing that matters in life is love. We miss her terribly.”
 

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