April is Stress Awareness Month, and this year the theme is #LeadWithLove, highlighting how even small acts of love and kindness can spark powerful waves of positivity. For families with children who have serious or life-limiting conditions, daily life can be challenging, and those little actions really can make a big difference.

For many families, having Demelza’s team on hand to help with everyday tasks takes some of the pressure off. Holli, mum to Albert, who has Batten’s Disease, says: “You’re never expected to go it alone – the team supported us in acquiring funding for a wheelchair accessible vehicle, and while we waited for the van to be delivered, the team have even been ferrying Albert to appointments in their own specially kitted out vehicle. I don’t think I would have had any idea where to start if it wasn’t for Demelza’s support. We’re so grateful we can lean on them.”

David, one of our practical support volunteers, always tries to make difficult days as easy as possible for families: “Driving the family to and from appointments took the stress away from them, as driving to a hospital can be a stressful thing. I was always there on time and waiting for them when they came out. I never wanted them to have to worry.”

Demelza’s care at home provides a pause in the stressful cycle of having to balance everything - parenting, chores, life admin - along with caring for a child with a complex condition. Holli says: “It gives us a break from the constant monitoring and worry, and knowing we can trust the Demelza team to look after our little boy is such a relief. It also means I can do the school run, without factoring in the extra time and stress of getting Albert dressed and in the car.”

But it’s not always about getting things done – sometimes managing the stress of life is as simple as talking to someone who understands. Holli says: “It’s not just the practical side of things, just knowing I can vent about it to one of the nurses is a massive relief – sometimes you need to talk to someone who understands how difficult it all is.”

Our creative therapies can also have a profound impact on wellbeing – taking just a little time to connect with emotions through creativity can help families in even the most difficult circumstances. Pete, our music therapist, says: “When a family is amidst these waves of medical staff, constant medications and often pain and distress, being able to provide a little oasis of musical calm, of empathy and humanness and kindness, is so valuable and beautiful.”

It’s those small moments of love and understanding that can mean the most to families with extraordinary children. From a helping hand to a listening ear, we’ll be there for families for as long as they need us.

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