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When a child has a life-threatening or terminal illness, family life is shattered as they try to cope with the reality that their child might die.听

Their world is turned upside down and they can feel completely overwhelmed, finding it extremely difficult to manage in the relentless day to day.

Rainbow Trust Children鈥檚 Charity has nine Care teams of expert Family Support Workers who provide vital practical and emotional support to families with a child with a life-threatening or terminal illness.听

Pairing each family with a Family Support Worker who supports the whole family at home, in hospital and in the community for as long as it is needed, we help families cope.

Support can include: providing respite for exhausted parents and siblings; helping to look after a seriously ill child in hospital; helping families find the strength to tell people their child has died; listening to a family鈥檚 anxieties; and driving families to essential hospital appointments to alleviate stress, particularly if a parent does not drive or is unable to work because of their child鈥檚 complex needs.

Families say we are a lifeline. The number of families needing our help more than doubled recently, increasing by 123%: yet we receive no central government funding and rely entirely on voluntary donations.听

Children with a life-threatening illnesses and their families are facing the trauma of navigating their very worrying reality alone.

Families need your help now: they don鈥檛 have time to wait.听

Please donate today to ensure families have the support they desperately need. 听

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I am honoured to be backing this appeal because my family benefitted directly from Rainbow Trust Children鈥檚 Charity鈥檚 support after my grandson Kitt was diagnosed with an aggressive cancer when he was 18 months old. I know just how vital Rainbow Trust鈥檚 Family Support Workers are in helping families cope.

The exhaustion, stress and the relentlessness of serious childhood illness cannot be underestimated and the simplest thing of having access to a Family Support Worker to help is invaluable.

By providing practical and emotional support and听giving your family time together, to spend with your other children, to breathe, or to sleep - because no one sleeps well beside a child鈥檚 bed in hospital - they help to alleviate the intense toll on the whole family.

Kitt is now eight and has a bright future ahead of him. His older brother Rory, now 17, still reflects on fond memories with Family Support Worker Angie as someone he could talk to, trust with his thoughts and worries and the big difference that made to him.听听

Thank you for supporting this appeal. By donating today, you can ensure more families like mine receive vital support when they need it most.

Emily, 13, lives in constant pain.听听

When Emily was five, she was diagnosed with听Demyelinating neuropathy, a neurological disorder characterised by progressive weakness. Emily also has severe scoliosis, an abnormal curvature of the spine.

Emily reached her milestones, albeit slowly, only to lose them again. Watching her deteriorate has been incredibly tough for her parents Laura, Emily鈥檚 full-time carer, and Ben, who works full time, and Emily鈥檚 siblings Oliver, 9 and Caitlin, 4.听

Rainbow Trust Family Support Worker Michelle started supporting them in June 2022.听

Providing sibling support for Oliver and Caitlin and emotional support for the whole family has made them feel less isolated. Oliver now loves school thanks to Michelle delivering drawing and talking therapy sessions, helping him with English and arranging for him to play football after school.听

Laura says 鈥淔amily Support Worker Michelle and Rainbow Trust are so caring. Having this help has massively changed my feelings of isolation. She鈥檚 the only person I talk to about my worries. I trust Michelle absolutely that what she does for Oli and Caitlin is in his best interests. She鈥檚 reliable and consistent. My kids love her.鈥澨�听听听

Eight-year-old Stanley, born with a genetic neurological condition, died peacefully in his mother听Shailza's听arms in October 2022.听Shailza鈥檚听older son, 11-year-old Riley, a cheeky, happy boy, has the same condition. He is non-verbal, tube fed, has poor muscle tone, and is developmentally delayed.听

Shailza knows that ultimately, her time with Riley will be cut short.听

Rainbow Trust Family Support Worker Jo has been providing emotional and bereavement support for the family since 2016. She has helped Shailza come to terms with Stanley's death and what the future might hold.听听

Jo鈥檚 support enables Shaliza to get out of the house and the chance to talk freely to someone who understands her situation. Crucially, Jo accompanies Shailza to Stanley's burial ground: they sit and chat, together keeping Stanley鈥檚 memory alive.听

Shailza says: 鈥�My boys are everything. I was heartbroken as a mother. I cannot explain the pain. I have no idea how long I have with Riley. I want to safeguard him and tell him how much I love him every day.听
鈥淔amily Support Worker Jo understands what I've been through. She helps me process my grief. It's knowing if I fall, someone will catch me.鈥�

Bea was rushed to hospital with heart failure when she was 15 months old. She lived in hospital for 15 months attached to a mechanical heart awaiting a transplant.听

Cheryl and Terry, Bea鈥檚 parents, felt completely overwhelmed. Cheryl lived in hospital accommodation for four months while Terry juggled hospital visits with being with their older daughter Eliza, Bea鈥檚 sister.听

Coping with the very real fear that Bea might die, separated from Eliza and a family tragedy in 2018 when their baby daughter Isabel died of an unrelated heart condition when Eliza was eight, took its toll.听听听

Terry and Cheryl say they wouldn鈥檛 have coped without Rainbow Trust Family Support Worker Monica. Monica听collected Eliza from school, took her to hospital and crucially put Bea to bed in hospital so Cheryl could spend time at home with Eliza.

Cheryl and Terry say:听鈥淭he bond Monica has built with Bea is incredible. You鈥檙e living every day with the reality that your child might die. Monica understands this.听
I never wanted to leave Bea. To have the trust and faith in Monica that I could leave and return to hospital knowing that she would be cared for knowing she was going to have fun was enormous. Without Monica, Bea would be screaming when we left hospital. With Monica she would wave us off.鈥澨�听听