Colchester mum thanks East Anglia's Children's Hospices

The theme of this year's Children's Hospice Week, running this week, is 'pushed to the limits', reflecting on how families have encountered extreme challenges over the past year.

Helen Sadler lives in Colchester with seven-year-old daughter Erin and Erin’s grandad, Philip, and is among parents who have found pandemic restrictions particularly challenging.

Erin has various conditions including some that affect her heart, kidneys and liver but despite this Helen said: “Erin is an incredible little girl.

"She’s a force of nature and shines so bright.

"She’s our sun and we rotate around her. She’s hilarious and has a wicked sense of humour.

"It’s devastating she’s never been able to reach her full potential due to her health, but she’s never permitted her health to define her.

"Erin’s resilience and tenacity is undeniable."

Helen said lockdowns became "overwhelming" as she and Erin were stuck inside their four walls.

She added: "One of my main frustrations with lockdowns is it feels like we’re just wasting Erin’s precious life.

"We’ve never been able to go far due to her medical needs and we’ve always been limited on the places we can go, but the pandemic has meant we’ve been completely confined to our home, and unable to even go for walks.”

As soon as it became possible following the start of the pandemic, Helen and Erin started visiting The Treehouse, East Anglia's Children's Hospices (EACH) in Ipswich.

Helen described how it gives her a break, while Erin calls the staff her friends and does activities she is unable to at home.

Helen said: “We have no routine other than medications and caring for Erin is constant, and very intense.

"I don’t think you can explain the exhaustion unless you go through it yourself.

"Knowing we have that trip to EACH is a light and just takes the pressure off.

"I know that one day a week I’ll be able to have a little break.

"I have no time for self-care. For me, my time at EACH is my self-care."

She said it gives her time to take a breath, take a nap, catch up with paperwork or just have some time to herself.

Helen added: “For Erin it’s a day out.

"Being in the EACH garden has been the first time she’s been able to go on a swing.

"Normal swings aren’t suitable for her, but The Treehouse has one we can put her wheelchair on.

"It’s something so simple, but it brings her so much joy and is something most families could easily take for granted.

"She loves it at The Treehouse, she feels safe and I can relax because I know it’s a safe space and she’s being cared for.

"There are very few places I can take my child and know it’s a safe space - EACH is one of them.”

As EACH continues providing vital support like this, the charity is calling on the public to pledge their support this Children’s Hospice Week.

Tracy Rennie, EACH director of care, said: “Every day, our teams of nurses, therapists, wellbeing mental health specialists and carers do whatever it takes to support families of children with life-threatening conditions.

"Children’s hospices are charities and while we receive some funding from the government we’re almost entirely dependent on the generosity of our supporters from communities across East Anglia.

"We simply couldn’t do what we do without those who care deeply about how families of children with life-threatening conditions are pushed to their limits.”

To find out more about supporting EACH visit each.org.uk/childrenshospiceweek.