Rachel’s story – Children’s Hospice Week 2021

Children’s Hospice Week 2021: Pushed to the limit… Rachel’s Story

Charlie and his sister Isobel on a walk

2020 was a year like no other for mum of two Rachel. When news of Covid-19 emerged, she was among the hundreds of families supported by Acorns who immediately isolated to protect a clinically vulnerable child.

Rachel’s nine-year-old son Charlie has a rare genetic disorder, which causes a number of complications. She and her family have been using Acorns since Charlie was two.

Because of Charlie’s condition, Rachel was told they shouldn’t even go in the garden.

She said: “The fear we have of the virus with Charlie, it petrifies us – that he could get it and that it could be him gone. It’s absolutely the most terrifying thing to think of.”

Because of various restrictions and shielding, the family had no carers coming into the house and with other community services suspended, Rachel says she and husband Jonathon were ‘exhausted.

To add to the strain, Jonathon who works in the events industry was made redundant in the summer, and Rachel has been dealing with ongoing health problems.

“Financially, everything’s an absolute wreck and I was recently diagnosed with rheumatoid arthritis. The medication that they put me on is basically a low dose cancer treatment. It’s completely wiped out my immune system. Jon’s was now having to look after me and the kids and taking work wherever he could. I was a nightmare just absolutely debilitating.”

The family hit crisis-point in June and spoke to Acorns. Charlie was booked in for an emergency stay for four nights. Following a negative Covid test, Charlie was taken to nearby Acorns in the Black Country, based in Walsall. It gave the family a break that Rachel described as a ‘lifesaver’.

“It just gave us the chance to rest. I was barely functioning and Jon was at the point of physically being broken.

The continual phone calls from Rachel’s Family Team Worker Bimla were a huge help. Bimla was also able to liaise with the family’s social workers and other external agencies, using her expert skills and knowledge of the system to help advocate for the family.

“Sometimes it doesn’t feel like our voice is enough. You can’t get hold of someone, or you feel like you’ve told them a million times and they don’t seem to be listening. It’s great to be able to have that extra voice pushing through.”

Whatever happens over the next year – Acorns Children’s Hospice will always be there for Rachel, Charlie and the whole family.

“It’s not just us – I know a lot of families who’ve hit breaking point throughout the pandemic and had to have emergency stays. We’d have nowhere else to go if Acorns wasn’t there.”

On Saturday 26th June at 8pm, tune in to an interview with Charlie’s mum Rachel

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