The Crows Foundation is proud to announce a partnership with the Little Heroes Foundation in the form of a $50,000 grant to help fund their ChildFamilyCare In-Home EB Nurse Pilot Program.
This is an innovative Australian-first which aims to assist children living with Epidermolysis Bullosa (EB) and their families. The new partnership will be launched at the Little Heroes Foundation Balfours Showdown Lunch this Friday July 6 at the National Wine Centre.
Sufferers of EB like four year old Ivy Krause (right), are commonly referred to as ‘Butterfly Children’ as their skin is said to be as fragile as a butterfly’s wings, blistering at the slightest touch. The wounds are likened to living with permanent third-degree burns. There is no treatment or cure for EB, with effective wound management being the most successful way to manage the painful symptoms.
Ivy’s mother, Hannah says, "Her skin is so fragile she can't grip anything “. "She can't step up a step by herself because she can't hold a handrail."
The Little Heroes Foundation ChildFamilyCare In-Home EB Nurse Pilot Program, funds the specialised training and provision of nurses to work on a regular, ongoing basis with EB patients. The nurses visit the children in their homes up to three times a week to manage medicated baths and dressing changes, providing parents with essential respite and relief so that they can return to being much needed ‘Mums and Dads’.
"I can't bathe her by myself because it takes three hours from start to finish," Hannah says.
Little Heroes Foundation’s Chief Executive Officer, Katie Bridges, is thrilled about the grant from the Crows Foundation and how much it will assist families living with EB;
“Thanks to the specialised care of these nurses, parents can now focus on providing comfort and reassurance for their children instead of managing the heartbreaking medical needs.”
“We are very proud to be providing support to families and children who have rare serious illnesses like EB, and are often lacking funds and support that meets their unique needs.”
Crows captain Nathan van Berlo says, “Kids like little Ivy are extremely brave and even inspiring”.
"I'm just lucky I have the opportunity to be an ambassador for Little Heroes and the pleasure of getting to know some of them."
Attending the Balfours Showdown Lunch will be Dean Bailey, Mark Ricciuto and chairman of the Crows Foundation Board Keith Conlon.
“We were very happy to assist in this project. Little Heroes do great things for children in SA and with our brief to help children in need, it's a great partnership," Keith says.
For more information about the Little Heroes Balfours Showdown Lunch please contact Caroline at Caroline@littleheroesfoundation.com.au.
