AT 86, Ken Stephens is on a journey to conquer the Murray River, driven by the goal to provide some much-needed relief to families of butterfly children.
Butterfly children is a term often used for children diagnosed with Epidermolysis Bullosa (EB), a genetic condition that makes skin as fragile as a butterfly’s wings, with large, painful wounds resulting from the slightest touch, even a hug.
Likened to living with third-degree burns, children with the condition must be bandaged everyday and require frequent bleach baths to avoid infection.
A burden which is largely placed upon parents due to the rarity of the condition.
With six children, 12 grandchildren, and three great-grandchildren, Mr Stephens has set a goal to fundraise $5000 for DEBRA Australia, an organisation dedicated to researching EB and supporting children and their families diagnosed with the disorder.
At $5000, Mr Stephens could provide an EB nurse for two weeks, either for one family, or to two families for a week each — to allow them to enjoy the pleasure of parenting as he has been able to.
Starting off at Bringenbrong, NSW, Mr Stephens stopped into Swan Hill last Thursday, 1000 kilometres into his 2500km journey to the mouth of the Murray.
Despite his undeniable commitment to the cause, Mr Stephens said he had never heard of EB prior to his decision to undertake the marathon trip.
“This was inspired by a sense of adventure…it’s a time in my life when I’m free of those commitments that tend to anchor you down in a place or a space, so I figured it was an ideal time to do it,” he told The Guardian.
“With a number of big fundraising campaigns going on I thought, well I wonder if it would be possible to create awareness and raise funds for a particular association.
“I threw that out to the walking group, and they, unanimously, came up with DEBRA.”
Mr Stephens said according to the World Health Organisation, there are approximately 1000 children with EB in Australia, of which the association has registered around 300.
“Now, when you consider that the disease itself is unsightly, and couple it with the necessity for bandages that are often bloody, parents tend to withdraw a little from society, so DEBRA is rationalising that we have 1000, but there are around 700 out there doing it on their own,” he said.
Mr Stephens said due to the rarity of the conditions and limitations on government spending, DEBRA attracted “absolutely no funding whatsoever” and he figured if he could raise some money “it might do some good somewhere”.
“I went to a couple of meetings and discovered there can be a lack of spontaneity between a child with EB and an adult,” he said.
“When you consider these children are in constant pain, their skin blisters at a touch and because of the rarity, the lack of funding and the lack of understanding, it is mums and dads who are essentially the clinicians in the situation.
“Every time mum or dad approach the child, it is going to inflict pain.
“I thought if I could raise sufficient money to allow parents to just step back from that for a while and enjoy their children, having enjoyed mine…I know the absolute pure joy of just holding your child.”
A little more research set the cost of a live-in, fully-qualified ED nurse at $2500 for a week, so Mr Stephens figured he would double that.
“And guess what — I’m nearly there,” he said.
“It’s over $3000, I’m not halfway yet, so I reckon by the time I finish this, the funds will be there to allow one or two families to get some respite and enjoy their children — which is what they should be doing.”
Mr Stephens said the interest in his trip so far was likely due to his grey hairs, but he didn’t mind so long as the ultimate goal and real reason for the trip were realised — and most of all talked about.
