Rainbow Trust Children’s Charity has launched a nationwide Summer Appeal to raise much needed funds to support children with life-threatening or terminal illnesses and their families.
Layla, aged four, and her family from Blackburn are fronting the appeal but families from across the UK supported by Rainbow Trust will benefit: like Emily’s family from Harlow.
With an estimated 86,000* children in England with life-limiting or life-threatening conditions, thousands of families have to face the very real possibility that their child may die and struggle to cope on a day-to-day basis.
Rainbow Trust has nine Care teams of Family Support Workers across England, including Essex, as well as an online team. Rainbow Trust pairs each family with an expert Family Support Worker who provide practical and emotional support to the whole family. Family Support Workers enable families to make the most of their time together, wherever they need it, for as long as is needed.
Rainbow Trust has been supporting families for almost 40 years and has supported 168 families in Essex over the past year.
Emily, her parents Remila and Bujar and younger brother Bjorn, aged three, have been receiving support from Rainbow Trust Family Support Worker Abi since 2023.
Mum Remila said: “We are glad to be supporting Rainbow Trust’s Summer Appeal, which will help raise much needed funds for families like ours. Our life was turned upside down when Emily was diagnosed with an extremely rare genetic neurological condition when she was two years old.”
Emily’s condition – De-novo-heterozygote variant gene SCN8A – causes severe epilepsy and global development delay.
Emily had her first seizure aged six months and their lives changed drastically as they were thrown into an unknown world of multiple emergency trips to A&E and hospital visits where Emily underwent genetic blood testing and investigations.
All the while the family was facing the additional stress of finding emergency accommodation that would be suitable for Emily’s needs after they had to leave their private rented housing at short notice where they’d lived for two years.
“We were scared we were going to be homeless,” Mum Remila said.
Emily is non-verbal and uses a wheelchair but she uses a walking frame with support when she is at school.
Remila said: “When Emily had her first seizure, that’s when our lives changed forever. The doctor explained the diagnosis and what we should expect in the future. We were very scared. We didn’t know what to expect for our daughter. We were scared about her future. That first year was very hard.”
Remila says Family Support Worker Abi has changed their lives: practically, emotionally, financially, and improved their mental health and wellbeing as well as helping them feel less isolated.
Already struggling mentally and physically with the toll and uncertainty of Emily’s condition, the rising cost of living crisis has been an increasing pressure on the family, particularly as Bajur is the sole earner.
Abi has become a source of strength for the family: Driving Emily and Remila to appointments at Great Ormond Street Hospital in London and Addenbrooke’s in Cambridge to save Remila, who is a new driver, the financial stress of fuel and parking and the emotional strain of navigating the rush-hour traffic alone with Emily.
Crucially, having Abi to drive them to hospital means Bajur, who is self-employed, doesn’t need to take a day off work to drive them so they don’t lose his wages.
“We were struggling financially so Abi’s support is very, very important, and it’s a big support for us. When you’re working it’s not always easy to ask for a day off. We struggled because at the time we didn’t have suitable property for Emily as well, so we had to privately rent it.
“And because of Abi, my husband doesn’t have to leave work very often. That is very important, because at the moment, it is only him working, providing for the family. In the past, it was difficult for us because he had to leave work very often to drive us to hospital appointments.”
Sarah, Family Support Manager for the Essex Care team, said: “When a child has a serious illness, family life is turned upside down and time becomes more precious than ever. Offering a range of support, tailored to each family, whether it is a chat to an exhausted parent, transport to medical appointments, respite or a day trip for a lonely sibling, or bereavement support can make all the difference to families.”
Remila said: “We are so grateful to Rainbow Trust; it makes such a difference. If you can, please donate today to help more families like ours receive the essential, amazing and much needed support they provide.”
Oonagh Goodman, Director of Fundraising at Rainbow Trust Children’s Charity said: “I am so grateful to Remila and Bujar for allowing us to share their family’s story to support 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. Your kindness can completely transform the feelings of isolation, worry and exhaustion that families may experience as they navigate the reality of a child’s serious illness, facing turmoil, uncertainty and fear. Please donate today.”
To support Rainbow Trust’s Summer Appeal please visit: https://donate.rainbowtrust.org.uk/summer-2025-appeal-donate/
