Wednesday, 19 September 2018
When Ivy was born it was obvious that she was unique. Born without the skin on her left leg , it was very early in Ivy's life that she was diagnosed with Epidermolysis Bullosa (EB), which is often called 'the worst disease you have never heard of.'
EB is a rare, genetic disorder, which causes the 'glue' between skin layers to not develop properly. This means that the skin layers are very fragile, and at the slightest touch can blister and peel. As you can imagine this condition is very painful and affects almost every aspect of Ivy's life. Unfortunately for Ivy, she suffers from the worst form of the condition, in that it affects her skin internally as well.
Children like Ivy are special because EB is so rare, and they are often nicknamed Butterfly Children, due to their fragile skin being compared to the wings of a butterfly.
To manage her condition, Ivy requires regular care, including bathing and bandaging wounds, and strong medication to help with the pain. Without a regular skin barrier to protect Ivy from infection, her care procedures are highly specialised. Through Little Heroes Care we provide an in-home nurse to visit Ivy’s family and to assist with the difficult care process, which can take up to three hours at a time.
Ivy’s full-time carer is her mum, Hannah, who does everything in her power to keep Ivy’s everyday life as regular as possible. The Little Heroes Care in-home nurse program helps Hannah maintain this routine while giving her and her husband some much needed respite.
Even though there is no cure for EB and Ivy will need care support for the rest of her life, beneath the bandages she is a fighter in almost every sense of the word.
- - - - - - - - - -
Ivy's parents Hannah and Steve are passionate about not only raising awareness for this incredibly rare skin disorder, but also about giving back to those who support them in daily life. Little Heroes Foundation, through its Little Heroes Care program, have provided Hannah and Steve with ongoing, in home nursing support for the treatment of Ivy's condition for most of her young life.
As their way of saying thank you to Little Heroes Foundation, for giving their family the support they needed most, they are planning an exciting fundraising gala dinner – the Little Wings Ball. Proceeds from this event will help to fund the ongoing Little Heroes Care program, to continue supporting Ivy's ongoing care, and to support other children and families in SA, who are living with a serious illness.
The Little Wings Ball Committee, and the team at Little Heroes Foundation hope to see you at the Adelaide Convention Centre this November to help us raise some much-needed funds for our Little Heroes.
- - - - - - - - - -
When: 6:30pm til late, Saturday, 17th November 2018
Where: Adelaide Convention Centre
Price: $195 pp
Help us raise some much needed funds for seriously ill children living in SA by attending the Little Wings Ball!
Hosted by Chris Dittmar, you will enjoy a 3 course dinner and drinks package, with plenty of opportunities to support our chosen charity - Little Heroes Foundation.
Bid on some amazing items in our Major Auction and Silent Auction, as well as our incredible car raffle - sold only to attendees on the night, dramatically increasing your chance of winning big!
Check out the video below from Harcourts SA, Triple M's Chris Dittmar and our Chairman Chris McDermott about the ball:
Categories: PostsNumber of views: 2890