Supporting Siblings of Terminally Ill Children

by Rainbow Trust Children's Charity
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Supporting Siblings of Terminally Ill Children
Supporting Siblings of Terminally Ill Children
Supporting Siblings of Terminally Ill Children

Project Report | Apr 15, 2024
Adjusting to life with a child with special needs

By Ellen Armour | Project Leader

Ethan & Family Support Worker Michelle at the park
Ethan & Family Support Worker Michelle at the park

In July 2022, Marie’s 36-week scan showed that the size of her body was that of a 40-week pregnancy. A second scan confirmed that Ethan had hydrocephalus, a neurological disorder caused by a build-up of fluid in the brain. Ten days later, Marie had a caesarean section.

When Ethan was born, he was taken to intensive care. At just two days old, he had a tube implanted in the brain and spent eight weeks in hospital.

The family struggled with the change this brought. Marie had to give up work to be Ethan’s full-time carer as his special needs and the many appointments made working impossible. Ethan’s older sister, five-year-old Kaitlyn, struggled to adjust to having a new baby brother with complex special needs.  

Family Support Worker Michelle began to support Ethan’s family in June 2023. She provides emotional, practical and sibling support for the family.

“I can talk to Michelle about anything, and Kaitlyn loves having her over too. Michelle also spends time with Ethan, and this helps me get things done, or do things that I normally wouldn’t be able to do. Michelle is such a big help.”

Michelle takes Kaitlyn out during the holidays to give her stability and the chance to have some fun, be a regular child and help with her emotional wellbeing and self-esteem. At Christmas, Michelle took Kaitlyn to a Snowdog Trail. Kaitlyn had two hours where the focus was only on her, she was able to run around and chat, and she didn’t have to wait for Ethan’s feeds or any of his care.

Alongside sibling support for Kaitlyn, Michelle also provides practical support, dropping Wing off at Ethan’s eye appointments, picking Kaitlyn up from school, sourcing tickets for special days out for the family and helping to fill in forms for housing.

Michelle looks after Ethan, taking him out to provide new stimulation and assist with his development, but also so that Marie can have respite and some time for herself. However, Marie finds the emotional support she receives from Michelle to be the most valuable.

“Michelle is such a good listener. It is good to have someone like Michelle to talk to.”

Rainbow Trust Family Support Workers help is a lifeline to families caring for a seriously ill child and is available whenever and for as long as they need it.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Family Support Worker Michelle with Kaitlyn
Family Support Worker Michelle with Kaitlyn
Kaitlyn at the Snowdog Trail with Michelle
Kaitlyn at the Snowdog Trail with Michelle


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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Facebook: Facebook Page
Twitter: @RainbowTrustCC
Project Leader:
Hanne Widmer
Leatherhead , Surrey United Kingdom
$33,813 raised of $40,000 goal
636 donations
$6,187 to go
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