Blackburn family caring for seriously ill daughter front summer fundraising appeal for Rainbow Trust

A mum from Blackburn is fronting a fundraising campaign for Rainbow Trust Children’s Charity, which provides vital support for her seriously ill daughter, Layla. Rainbow Trust supports families who have a child with a life threatening or terminal illness.

Layla was born six weeks early by emergency C-section and had a cardiac arrest. Just newborn, she needed resuscitation for 17 minutes. During those 17 minutes, Layla suffered a lack of oxygen that caused damage to her brain and she was left with a brain injury called hypoxic ischemic encephalopathy (HEI). She spent 89 days in the Neonatal Intensive Care Unit.

Mum Clara says; “It was the hardest time of our lives, the worst time to ever go through. Our lives completely changed. Everything we had once considered normal was no longer possible and all the routines and everyday life we once took for granted vanished in an instant.” 

Rainbow Trust which has supported the family for four years, pairs each family with an expert Family Support Worker who enables them to make the most of their time together, providing them with practical and emotional support, wherever they need it for as long as is needed. 

Clara says; “Without Rainbow Trust I wouldn’t be in the place I am now. If you can, please donate today to help more families like mine receive the essential and amazing support they provide.” 

Four-year-old Layla also has cerebral palsy, epilepsy – she suffers from daily seizures - and is registered blind. She has also been diagnosed with laryngomalacia, which caused her airway to collapse and has a tube fitted into her stomach for feeding. 

Clara says; “Caring for Layla is 24 hours’ a day, relentless, day in day out and has meant I have had to give up my job. We don’t have any respite and don't get any time for ourselves – to sit down, eat, shower – the everyday small things. It is exhausting and overwhelming.” 

When Layla was six months old, Clara and her partner Anthony were referred to Rainbow Trust and paired with expert Family Support Worker Brodie.  

Clara says; “When Layla first came home from hospital she slept very little and it was an incredibly tough time. Brodie ensured we got some valuable respite. She would take Layla to the park or do some sensory play with her just to give me time to get some jobs done around the house, have a shower or catch up on sleep.” 

Before Rainbow Trust, the family received mainly medical support.  

“Having support from someone non-medical is invaluable,” Clara said.  

“Brodie supports us in any way we need – emotionally and practically – which is amazing. She'll come, we'll have a brew, we'll have chat, about anything and everything, and she just listens, and she's there.” 

One of the practical ways Brodie provides support is by driving Clara and Layla to hospital and attending their regular appointments. 

Clara says; “I really struggle to get Layla to hospital appointments as I don't drive and public transport is unreliable and expensive. Brodie’s support is such a relief – she takes us to appointments across four different hospitals allowing me to focus on Layla and her needs, reducing my stress. Brodie makes sure I don't miss any crucial information. She takes care of Layla so I can focus on what the doctors are saying.” 

Rainbow Trust also enables families to make the most of their time together. Days out and trips to the park can become almost impossible when caring for a seriously ill child.  

Clara says; “I am very big on making memories and trying to give Layla wonderful moments in between the hospital appointments but preparing for a day out can feel impossible – finding accessible places, preparing feeds and medication. With Brodie’s help we have been able to attend days out planned and hosted by Rainbow Trust to Sealife in Manchester, farms, parks and even the beach.” 

When a child has a serious illness, family life is turned upside down and time becomes more precious than ever. 

Oonagh Goodman, Director of Fundraising at Rainbow Trust Children’s Charity says; “I am so grateful to Clara for allowing us to share her family’s story to front our summer fundraising appeal.  

“Just £5 per month could provide a memory box for a bereaved family or £10 per month could provide practical and emotional support to a frightened and confused sibling. £30 per month will pay for an hour of vital support to a family caring for their seriously ill child. 

Whatever you are able to give, your kind monthly donation can help support families with a seriously ill child to make the most of their time together helping us to provide expert practical and emotional support, where they need it, for as long as it is needed. Your kindness can completely transform the feelings of isolation, worry and exhaustion that parents like Clara may experience as they navigate the reality of their child’s serious illness, facing turmoil, uncertainty and fear. Please donate today.” 

To support Rainbow Trust’s summer appeal so that we can support more families like Clara’s please make a donation visit donate.rainbowtrust.org.uk/summer-2025-appeal-donate/