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May 2002

Times change - A family's story about living with EB

By Robyn Gobert,
Past President of DEBRA Australia Inc.

Like most Australian housewives, I was doing what we were all doing around 1pm - watching the Mike Walsh Show. Some will remember it. It was the long-running forerunner to the Midday Show. A taxi pulled up outside my flat. To my surprise, my five-year-old daughter came limping inside. Her nose, temple, arms, legs, ribs, fingers and toes were badly skinned.

There is no need to detail the heartbreaking story of a mother comforting her wounded child, every parent can identify with that. Except for us it was almost a daily ritual. You see my daughter was born with Epidermolysis Bullosa (EB), or "cotton wool baby" syndrome.

Adopting my practiced, "I’m the Mother" face I put my daughter in a warm bath and turned up the television to mask her squeals and sobs as the dettol-laced water stung her wounds.

An 8 year old child with EB.

There wasn't a choice ...

I had to let out the big blood blisters on the palms of her hands and get the gravel out of the open wounds before they became infected. It was simply how we handled it back then. We didn't go to the doctor unless we needed antibiotics. Anyway, I was an old hand at dealing with this type of thing. As a sufferer of EB myself I'd been doing this for the last 20 years.

Here we went again. Seething, yet too reticent to speak up for myself, I phoned the pre-school. "It seems a boy pushed Julia off the top of the slippery slide when they were playing during lunch, Mrs Warren," was the lame excuse. "We thought we'd best send her home to you ..."

Why had I bothered to spend over an hour explaining our skin condition to these people and giving detailed lists of what Julia could and couldn't manage to do because of her disability?

As I’d spoken with them I could see the pursed lips that made their thoughts transparent: "Only child - over protective mother". Well, it hadn’t taken long too prove them wrong, had it, and Julia had paid the price. I was so frustrated and angry I could have gone up there and screamed at them until I was purple. I was an expert on this condition! My own childhood had been torturous, as people with disabilities were not made to feel like valuable members of the community in the fifties and sixties. Nothing was expected of me other than to sit in the corner and "be disabled". Having a "disease" so rare that no one knew anything about it exacerbated our problems. People shunned us as they thought they might catch it. Parents called their kids away. I wasn’t allowed to play with very many other kids in any case, as they’d be too rough with me. Any rough handling could sheer away sheets of skin or blister me. Most of the time my extremities were blistered or I had bandaged lesions. Because the wounds all went deep into the flesh, my arms and legs were badly scarred with big, purpurpish-red scarred patches. I had no fingernails or toenails and my teeth were "soft".

Yet again my little girl was bandaged like a mummy as she lay in front of Play School, sipping warm, sweetened milo to allay the shock to her system. She sang along to the familiar tunes and talked back to the television presenters, as they had become her friends in her isolation.

In 1973, when Julia had been born, it was unimaginable to me that she would have inherited my skin condition. It wouldn’t be fair. I was yet to realize that life is far from equitable. When I’d first fallen pregnant we’d gone to a skin specialist and he’d assured us that our child would not have my Epidermolysis Bullosa. This "specialist" had said, No, this only pops up every so many generations. You'd have to be unlucky in the extreme!"

Julia, my daughter was beautiful and she had EB even more severely than mine. She wouldn’t sleep more than a few hours at a time for the first two years and she’d hurt herself on an hourly basis.

As all these memories came back and I was once again faced with Julia's wounds. My anger boiled over. I went out into the lounge and began chicken-pecking a letter out on my little Olivetti. "Dear Mike Walsh" I wrote. "You had a lady on your television show today who was complaining that her little boy had something or other that sounded pathetic. It makes me sick! If her little boy had to go through what my daughter is going through every day, and I’ve been through for 26 years before her, then you’d all know what suffering is all about!" Furiously I stabbed each word onto those 11 pages, spelling mistakes, typos and all.

At the post box at the end of our street, I popped the bulging envelopes in; one was simply addressed to "The Mike Walsh Show, Sydney". I didn’t expect anything to happen, but I felt better. I guessed I had at least told someone else what life was like for us!

The next Wednesday I ran to the telephone box and phoned my parents. "I'm going to Sydney!" I yelled down the phone. "The Mike Walsh Show has sent a telegram and they want Julia and me to fly down!"

I had received sacks of mail in response to the segment. Some letters were just addressed to "The raw skin disease mother and her daughter - Townsville", but they found me.

Many carried the same sentence. "We didn’t know there was anyone else in Australia with EB! Please lets keep writing as we've felt so isolated with our condition."

I hadn’t experienced such empowerment in my life. I was not a freak! There were others out there that had gone through, and were going through, all that my parents, Julia and I had experienced. You may not be able to imagine what a difference that made to me, but I had always believed that there were only five of us in the world with EB.

The letters eventually slowed to a trickle. I’d placed Julia in pre-school in the special school and I spent all day, every day, blissfully writing letters to all of my new friends.

Around the same time I was told of a Phyllis Hilton in England who’s 12-year-old daughter, Debra was the most severely effected EB patient who’d ever lived past a few years and it was solely due to the tenacity of her mother. She had EB internally as well as externally and the photos I have of her are unbelievable. You wouldn't credit she'd survive.

Phyllis had just formed the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) in England. I wrote back to say I'd decided we'd form the DEBRA - Australia Inc. I had no idea of how to do it, just that I’d do it.

Soon I found I was the President of a run-away train and that I was ill equipped to handle all of this publicity, run the ever increasing demands of this expanding charity and raise a child with EB on my own.

The DEBRA’s in America and England are still going strong and have expanded to include new groups for related skin conditions etc. They have my most hearty congratulations.

Today I live with the arthritic complications of my EB. Most of the time I have to use a wheelchair and I work hard to raise public awareness about the need for disability access. Numerous web sites carry my articles and information about my coming’s and goings.

Family photograph - Julia, Robyn and Zach.

My daughter is 29 and she has an eight-year-old son, Zachary.
Yes, he has EB and yes, it is more severe than Julia's. We all knew she’d have a 50/50 chance of having a child with EB, and he's an amazing kid.

Although his physical distress still makes me cry, he’s a beaut little boy and he does not suffer the amount of taunting and heartache that both Julia and I suffered at school. We won’t put up with it. Simple as that.

We are all diligent about taking care of his emotional and psychological needs. Physical wounds can be fixed with a bandaid, but the internal, emotional wounds tend to stay for a lifetime, festering anew with each rejection, slight and false accusation. They’re hard wounds to heal. It's been a long, hard struggle but well worth the effort.

On Zach’s first day of school we took an old Nationwide TV segment tape along and played it for the teachers and staff. It made things a whole lot easier and all have been absolutely wonderful to him.

If people would like to contact me as a result of this article, I’m pleased to receive genuine mail at gobie@cyberwizards.com.au

Dystrophic Epidermolysis Bullosa Research Association (DEBRA) links
Other articles by Robyn Gobert

Google links

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