Most of us will think nothing of having a decent night’s sleep. But for mums like Nichola Smith, a good night’s sleep is a rare luxury.
This is because her five-year-old son, Lewis, has a rare genetic condition called Tuberous Sclerosis and, like many children and young people supported by Tŷ Hafan, requires 24 hour care.
“When I think of my daily routine, it really starts at midnight rather than the normal 6am or 7am,” said Nichola.
“An average night involves pain management, including giving medication and abdomen massages, washing him, feeding him and dealing with seizures.”
When the morning finally arrives, Nichola will tackle day-to-day tasks like meal times and the school-run with daughter, Holly, as well as caring for Lewis and organising appointments and ordering medication.
This is why Nichola, of Llantwit Fadre, is such a supporter of Tŷ Hafan’s Wales Onesie Walk, organised to raise vital funds and awareness of the challenges families like hers face.
Now, entering its 5th year, the Tŷ Hafan night-time walk taking place on Friday 26 June, starts and finishes at Cardiff’s Millennium Stadium.
Nichola said: “I’d like to thank all the ladies who take part in the night-time walks. They are always such fun and highlight some of the difficulties that families like ours face.”
Tŷ Hafan offers a range of services for life-limited children and their families, one of which is providing short-break care to children and their families at its hospice in the Vale of Glamorgan so families can take time out from their caring duties.
Emily Fradd, Marketing and Events Coordinator at Tŷ Hafan, said: “The vast majority of Tŷ Hafan’s funding comes from charitable donations and fundraising. The Wales Onesie Walk is one of the activities raising these vital funds.”
The event, kindly sponsored by Cardiff’s Walkabout – the official venue of the Wales Onesie Walk after party – has had a makeover. This year walkers are required to wear a onesie and can choose from a choice of 5km or 10km routes, both ending at midnight.
Emily added: “It’s a magical night-time walk, with the camaraderie between the hundreds of women taking part, creating a wonderful atmosphere. As well as the walk, there will be pamper sessions, music, games and prizes before the event, and the usual glow packs and giveaways on offer.”
The Wales Onesie Walk is a ladies-only event starting at 10pm. Men are not being left out as Tŷ Hafan needs male marshals to provide a clear and safe route for the ladies taking part.
Entry is just £10 per person and each walker is asked to raise £50 in sponsorship.
To register or for more information, please visit www.walesonesiewalk.co.uk