THE parents of a little boy who died from a genetic disorder are urging the public to back a Claire House butterfly bake in aid of hospice staff who helped care for him.

Paul and Angela Hunter, from Prenton, never imagined needing a children’s hospice, but it became a sanctuary for them and son Jude, who sadly died on May 30, 2019.

At a few days old, Jude started having terrifying seizures that were uncontrollable; sometimes he could have 15 a day. After months of testing, Jude was diagnosed with a condition called D-Bifunctional Protein Deficiency, a disorder that affects the ability of the body to effectively break down fat from our diet.

It is characterised by hypotonia (low muscle tone) and seizures in the new born period. Other symptoms include unusual facial features and an enlarged liver. 

Jude's mum and dad now need your support for Claire House's annual Butterfly Bake, named after the vital end-of-life care provided by the hospice. Kind-hearted supporters can help their local children’s hospice by baking cakes, biscuits, pastries, or bread throughout March.

The Butterfly Bake is named after the vital end-of-life care provided by Claire House in Wirral – and everyone can get involved.

Whether you are baking at school, having an office bake-off or swapping tasty recipes with friends, you can don your apron to help Claire House.

You could even hold a bake sale at the local village hall or in your home.

Every penny raised will help the charity to reach out to more children and their families in your area.

Jude's mum Angela said: "Before our son Jude passed away, we knew the Butterfly suite was there, but we never really knew what it was. It wasn’t until the time came that we realised how special it is.

"The Butterfly team couldn’t have done enough for us, and all the hospice staff were so friendly and compassionate.

“They took away the worry of having to think or organise anything, we could just spend time with Jude knowing everything was taken care of.

Wirral Globe: Jude Hunter, who passed away in 2019 Jude Hunter, who passed away in 2019 (Image: Picture courtesy of family / Claire House)"Claire House was our sanctuary, our happy place, without them there would have been a void.

"It would be amazing if as many people as possible could take part in the Butterfly Bake as all the money raised will go towards helping families like ours.”

Cora Shafto, community engagement manager at Claire House, said: "The Butterfly Bake is a great way to get involved with Claire House and to find out more about one of our most vital services.

"The bake is named after the end-of-life care we provide, and the butterfly symbol is used by children’s hospices because it is beautiful, yet fragile.

"Anyone can take part during the month and your support means we can be here for more children and their families when they need us most.”

The aim of the Butterfly Bake is to shine the spotlight on the end-of-life and bereavement support Claire House provides to families.

When a local baby, child or young person dies, Claire House offers practical and emotional support during the toughest of times.

The Butterfly coordinators support bereaved families in the Wirral hospice or at home.

They can help with registering the child’s death and funeral planning as well as collecting mementoes, supporting grieving siblings and offering a listening ear whenever it’s needed.

Last year, Claire House cared for and supported 100 babies, children and young adults at the end of their life.

£7 could pay for a parent to have a comforting chat and a cuppa with a bereavement specialist.

£47 could fund a counselling session.

£103 would cover a whole day of bereavement care, or £51.50 for half a day of Butterfly support.

To get involved in the Butterfly Bake, visit www.clairehouse.org.uk/events/butterfly-bake-2024/ You can also call 0151 343 0883 or email fundraising@clairehouse.org.uk.