In Memory of Violet

Violet Wendy Grace Taylor

September 2022 - August 2023

Ystrad Mynach, Caerphilly

"Violet, my sweet baby. You fought so hard right until the very end; you were so strong, resilient, fierce. I am so, so proud of you. You were so perfect and precious, a fighter who took on everything. You were still smiling, despite all you went through…I will cherish the 11 months we had together forever. What an absolute honour it is to be your Mammy.”

Violet was born in September 2022, ventriculomegly and under rotation of the hippocampus was picked up during pregnancy. Violet had a lot of hospital admission as a result of respiratory issues, aspiration, and failure to thrive. She was breastfed for two months, bottle fed for two months, but when she caught Covid, she had to be moved to tube feeding. She had nystagmus and impacted vision though she could definitely see and loved smiling at the faces she recognized. Her hearing we believe was perfect. She had severe hypotonia which is one of the main reasons she was taken from us, her tone was too low to expel enough CO2. She also had paralyzed vocal cords, though she could giggle and make noises. She had laryngomalacia, trachemalcia, and a narrowed airway. We only ever watched her have one seizure and she was immediately put on medication to stop them. She also had severe obstructive sleep apneas. She was diagnosed with TBCK after she was admitted to the ICU following a bout of rhinovirus. She was 9 months old when she received her diagnosis. Though her brain was telling her to breath, a combination of her symptoms meant that her body wasn’t able to support it. She was taken off the ventilator and managed well for the first week, but during our second week at the hospice she began to show signs she was struggling. She passed away in my arms. She was 11 months old.

Despite her struggles, she was always such a happy baby. She loved having a cuddle on your chest, her dummy, and sucking her thumb. She loved having her hair brushed, having a massage after a bath, and listening to music. She had the best smile I’ve every seen and the biggest, brightest eyes.

She had two big brothers who adored her, as she did them. We miss her enormously and we will forever.

Her family kindly requests that donations be made in her honor to The TBCK Foundation in order to support families through efforts to advance research and improve lives impacted by TBCK Syndrome. May Violet’s memory be carried on through the generosity of others.