for families facing terminal illness

Ciara's Story

About

Ciara was born in 2006 with a rare, incurable, genetic condition called Epidermolosis Bullosa (EB), where the slightest bump or knock results in her skin blistering or shearing off. The condition causes blistering internally as well as externally..

The Challenges

Ciara’s care, both remedial and preventative is conducted on a 24-hour basis. When small, she was bandaged from head to toe - to protect and heal her daily blisters, some the size of a tennis ball - and changing the bandages is an extremely painful process. Through all the up and downs, Ciara and her family have had ongoing care, emotional support and respite from ellenor. 

How We're Helping

ellenor nurses are on hand to advise about Ciara’s complex care needs and we’ve also provided much-needed respite care. Says Grant, Ciara’s Dad: “The ellenor respite team has helped us tremendously and enabled us to have some time and share time with our son Jonathon, who often gets overlooked in daily life.”.

Supporting the whole family

Jonathon benefitted from play therapy when he was starting school. “An ellenor play therapist came to our home and, after a number of sessions, confirmed he was a happy, settled boy,” says Grant. “It provided us with reassurance and peace of mind.”

"ellenor is the ‘fifth member’ of our family."

--Grant, Ciara's Dad

The Future

Although her condition has become easier to manage as she has got older, it is not going to improve. At the moment there is no cure for EB and Ciara will require constant care until well into her teens. “This is made easier knowing that ellenor is there to give support. Ciara’s condition is bad and, to an outsider, it looks near on impossible to cope with, but we have managed to do this because of ellenor,” says Grant.