Rainbow Trust Children’s Charity are a charity providing emotional and practical support for families who have a child with a life-threatening or terminal illness.
Dawn, a Rainbow Trust Family Support Worker based in Southampton, shares her day with us.
Monday morning and my day began setting off for the ferry port to travel to the Isle of Wight. The one hour crossing gave me time to do any outstanding case notes and to check my emails. Once on the island, I travelled 30 minutes to Sandown to support the first family of the day.
This family has two children, both of whom were adopted from Ethiopia. Joseph is still undiagnosed, is blind, has no core strength and has regular seizures. While his mum fed him, we chatted about how she is managing and about how Joseph is doing. She had booked a Rhythm and Rhyme class for the children and needed my help, so I collected Thomas from pre-school and supported him the first half of the session. I took some pictures for mum’s activity diary and then took over with Joseph so mum could spend time with her other son, Thomas.
Once we got back home, I fed Joseph while mum played with Thomas. We put some more dates in the diary around hospital appointments and a visit to the hospice on the mainland.
I grabbed a quick snack in the car and travelled to the next family.
Lucy is 12 and has Retts syndrome, a neurological disorder which affects little girls. She is in the later stages and cannot do anything for herself. I supported mum with getting her changed and hoisted into her chair. She is a very smiley and beautiful girl but her life expectancy is limited. I updated Lucy on any gossip and gave her a Christmas gift that had been donated.
Mum did the washing while I read Lucy a story about princesses. Jen, the weekly carer, arrived and we hoisted her onto the wedge and put on the ceiling stars and turned the lights out. I made some more appointments then left her ready for bed, gazing at the stars.
Half an hour later I was on the ferry home. I did my case notes and made an appointment with Parent Voice and got home at 7:45pm. There is no such thing as a “typical day” and I look forward to what tomorrow brings.
There are many families in the UK who could benefit from the special support that Family Support Workers, like Dawn, provide.
You can support Rainbow Trust’s appeal to sponsor a Family Support Worker just so important