Luella Coleman, from Brighton, died unexpectedly in November 2024 at the age of six.
She was born with CPAM (Congenital Pulmonary Airway Malformation) and had been undergoing surgery.
CPAM is a rare genetic condition which is present at birth. Babies with the condition are born with benign lumps, lesions or cysts on one of their lungs.
The condition typically has an excellent long-term prognosis, with surgery to remove the affected tissue if necessary.
“Luella was magical,” Melanie said, Luella’s mother. “She was known for being loving and generous and was always smiling and laughing.
“She adored the beach and being outdoors. She wasn’t a girlie girl but loved to dress up as fierce creatures like a dragon or a lion. She was very creative, always drawing and had a strong imagination.
“Luella was diagnosed with CPAM antenatally and lived a normal and healthy life. She showed so much courage always, with her adventurous spirit.
“At school she was known for her kindness and being an incredible friend; so much so that the school now award a half-termly Friendship Award in Luella’s name to a Key Stage 1 pupil who has shown exceptional friendship values.
“Luella is remembered with so much love by everyone who knew her, and she is desperately missed.”
Luella’s family has raised just shy of £10,000 to build a friendship garden at Balfour Primary School in Balfour Road, Brighton, in her name.
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The garden will be a place for pupils to play and learn for years to come.
The family will be asking children in Key Stage 1 what they would like in the garden and developing a design that is engaging for them, is colourful, and where a variety of activities can take place, such as growing, creating and playing.
“Luella loved the outdoors, and she loved being at school,” Melanie said.
“She was never happier than when she was exploring nature; Luella would spend hours playing with bugs, climbing trees and helping us out in the garden.
“We thought everything that represents our girl’s loves – friendship, nature and play – could combine perfectly in an outdoor space at the school to remember her.
“Balfour Primary School have been such an incredible support to our family also, and this way we can create something both lasting and meaningful for everyone.”
Melanie added: “This garden has brought us so much hope, because of the incredible response to the fundraiser.
“Every single contribution, no matter the size, represents a donation of belief towards the project for us.
“It is a coming together of our community, friends and family and shows how much love there is for our beautiful girl.”
Alan Gunn the headmaster of Balfour Primary School said: “This garden will be a special place of remembrance, connection and friendship in Luella’s honour.”
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