It means so much to know that you have some support

Sarah and Tommy

Tommy is 11 years old. His mother, Sarah, was initially told that he wouldn’t live past four, after being diagnosed with a rare genetic condition called Wolf Hirschhorn Syndrome. Tommy has been in and out of hospital throughout his short life, as Wolf Hirschhorn means that he has global development delays, life-threatening epilepsy, low immunity, low muscle tone and feeding difficulties. But despite the many difficulties and challenges he has faced, Tommy continues to achieve so much and constantly surprises his Mum with his fighting spirit and sense of humour.

Because of this medical condition, life for Sarah and Tommy is complicated and often stressful. Tommy is regularly very poorly and he needs 1 to 1 care, 24/7. This leaves Sarah very little time for herself, or even time to look after the house.

When he was three years old Tommy’s social carer recommended Florrie’s Children’s Team to Sarah to support them both with respite care. Nurses go to Tommy’s home to care for him, which allows Sarah some time to herself – to have a break, and know that Tommy is still being well cared for and supported.

“It means so much to know that you have some support and can have a break from the caring role – even if it’s a short one and you end up doing shopping, gardening or housework during that time, it still makes such a difference physically and mentally.”

The Florrie’s team are professional and caring, and have been “even more amazing during lockdown” says Sarah – helping with Tommy’s recovery from major spinal surgery, and being there to support and care for him throughout. Sarah says the team “genuinely care, and wanted to know how Tommy was doing during his time in hospital.” Sarah also finds that the care Tommy receives from the Florrie’s team complements the other care the family receives and they care flexible with dates and schedules so that their support is there at the right time.

That support Florrie’s provides is vital to families like Sarah’s. When Tommy’s carer was unavailable due to illness Sarah says that she really felt the pressure. That’s why she feels that Florence Nightingale Hospice Charity is so important – “they provide much-needed support and respite to carers in the area. Most people think of hospice as end of life care, but they aren’t aware of those that the hospice supports via outreach services like myself and Tommy.”

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