A LONGWELL Green family are spearheading the Christmas appeal for Children’s Hospice South West.
Marc and Dana McKeen say their lives have been transformed this year since they and their daughters Kirianna, 11, and five-year old Zeniah started going to the hospice’s Charlton Farm.
Zeniah was born with four large holes in her heart and was later diagnosed with Mowat-Wilson Syndrome, a rare condition that makes her prone to seizures.
Her parents had been struggling to care for her at home and welcome the respite at Charlton Farm and the support they and Kirianna receive.
“We felt like we were scooped up and looked after,” said Dana.
“Being there made us feel that we were not so isolated, that we weren’t always coping on our own. They could actually ‘see’ us and understood how tough it is. They knew we were doing our best, but they could also see that we needed help.
“The staff know how tricky things can get for us as a family and every single one of gets everything we need while at Charlton Farm.
“For the first time in five and a half years someone apart from Mark or I put Zeniah to bed. She felt so comfortable, at ease. Everything the staff do there is with such love, such care and at the right pace
“While at Charlton Farm, Kirianna meets children who have a shared life experience,”
“There is that shared understanding about what it’s like to be the sibling of a life limited brother or sister.”
The family told their story as Zeniah and Kirianna were invited to switch on the Christmas lights in Clifton Village to highlight CHSW’s appeal.
Dana saif the support of CHSW has changed her family’s life.
“It’s been transformational,” she said. “We feel we have someone in our corner at all times. They want to see you not only succeed as parents, but as a family. Charlton Farm has been a real turning point for us. We feel like we can breathe again and that life is a lot more manageable than it once was.”
How you can help
Zeniah is one of 500 children receiving support from CHSW. To support CHSW visit https://www.chsw.org.uk/make-this-christmas-count