Lily and Willow’s Story

Michelle Bamber and husband Jamie have two very special reasons to appreciate the help and support of East Anglia’s Children’s Hospices (EACH). They have not one but two daughters receiving care at Milton.

Lily, 13, and Willow, eight, have a severe neurological condition called Leigh’s Disease.

Lily was born in February 2009, appearing a healthy, contented baby and reaching the usual milestones.

It wasn’t until she started walking at 17 months that Michelle and Jamie felt something wasn’t quite right. However, it took until Lily’s two-year check before she was diagnosed with Mitochondrial Disease in July 2011.

She also stopped standing and walking unaided at that point and was started on a cocktail of vitamins. She also underwent a muscle biopsy.

In 2012, Michelle and Jamie were told Lily had novel mutations in the NDUSF7 gene, Complex 1 Deficiency and it was called Leigh’s Disease.

The couple wanted another child, but their genetics counsellor told them there was a one in four chance of recurrence.

Willow was born in September 2013 and early the following year a specialist confirmed she has the same mutation.

Leigh’s is a progressive disorder that affects the central nervous system and, as a result of their condition, both Lily and Willow are regular visitors to Milton.

Michelle said: “We’ve been coming here for the last ten years and accessed various services, from music sessions to wellbeing support.

“We’ve also attended Christmas parties, dream nights at Colchester Zoo thanks to EACH and we were also fortunate enough to visit Disneyland Paris, thanks to EACH and the Magic Moments charity.

“Milton is a special place to us and has made a big difference. Just having that support close at hand has been hugely reassuring, in case either of the girls regresses or has any issues.

“We enjoy attending family events and making memories and it’s also nice spending time with others going through similar things.

“To us, it’s a happy place and most people have the wrong idea and impression of what a hospice entails. They see it as somewhere people go to die, but we know that’s not the case.

“Jamie and I enjoy being there and our happy, beautiful and determined little girls also love spending time at Milton.”

Both girls attend mainstream schools in Haverhill – Lily goes to Castle Manor Academy and Willow is a pupil at Clements Primary Academy.

The Bamber family recently met The Duke and Duchess of Cambridge during the Royal couple’s visit to Milton.

Published in July 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

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