Jack, almost four, also has Netherton's Syndrome, the rare form of ichthyosis I have (I was diagnosed with ichthyosis form erythroderma at birth and Netherton's aged 10). In the UK there are only 16 people with the condition, less in Australia. There are some physical (genetic) similarities between Jack and I - he too is small for his age as I was, we have similar bone structure and facial features, red scaly skin (though his arms and legs seem less red - but no less painful - than mine) - and brittle hair. I didn't want to stare but I couldn't help noticing Jack's skin and its similarities to mine. The scales, the redness, the fineness - almost transparentness of it. It was like looking into the mirror at a much younger, blonder version of me.
Until today I had only met one other person with ichthyosis - Jeff in Queensland, in 2007 - but Jeff has a different form of the condition to what Jack and I do. I kept saying to Jack, "we are like twins!" It was a good opportunity for me to share my medical and social experiences with Jack's parents, and articulate the pain that we feel - for it is hard for a little boy to do so. I was also able to reassure them that Jack will be just fine when he grows up. When asked what he wants to be when he grows up, Jack said a footballer. His Mum said he will be working and drinking beer when he is an adult, they don't expect any less of him. I love the positive attitude and values Julie and Danny have - they are really teaching Jack that he is important and can make a difference to others - which he is doing, just by smiling that gorgeous grin.
I also commend Julie and Danny for instilling self belief in Jack and for being so positive with society's reactions and in their own expectations of Jack. They are very similar to my parents, who never stopped me from reaching for the stars. I think it is important for parents of children (and adults) with illnesses and disabilities to be positive and set good examples of positivity and strong work ethic for the children, and believe that their children will have "normal" lives, so they grow up knowing they will be valued members of society. Great work Julie and Danny!
Jack and his parents do amazing work raising both awareness about the condiition and money for Netherton's Syndrome research. Jack's parents had cards made with information about Netherton's Syndrome so that when people stare and ask questions, they can easily be informed. Today a number of people stopped to ask questions or rudely stare and comment, and Julie and Danny handed out cards. Jack was so cute in posting his card through the money slot in the taxi cab. In Jack's short life, Julie and Danny have worked with the community and the media to raise over £16,000 which goes directly to the research laboratories to help people like Jack and I Improve and cope with the medical side of Netherton's Syndrome. A bloody awesome effort, especially considering they both have jobs and the challenges of caring for Jack. You can read all about their work raising awareness and funds and Jack's story here.
Lately I have been learning about and discussing the "negative/positive feedback cycle" in relation to people with facial disfigurememts and visible differences (and also disabilities). James Partridge, CEO of Changing Faces sat down to chat with me during the week about this, and I have also discussed it with the Centre for Appearance Research. The negative cycle, explained simply, is the expectant behaviour of people who look different. Because of previous bad experiences - stares, nasty comments and abusive behaviour, people often anticipate their next encounter with someone will also be negative. And so, often before any interaction has taken place, the person who looks different assumes the worst, sometimes putting out negative vibes. This may be in the forms of not making eye contact, not speaking clearly and not smiling or just being rude. And so the person they are about to interact with assumes negativity, and in turn, reacts negatively. So the negative cycle continues.
A positive feedback cycle, however, is the opposite. Person with visible difference assumes the best intentions of society, sends out positive vibes by smiling, interacting willingly and positively and making eye contact and conversation. Society sees the positivity in that person with a visible difference, and their perception of that person is altered - they still may be curious about their looks, but also see the positivity and willingness to interact. And so positive cycle continues.
I think I am a positivity cyclist. Hell, it is the only cycling I do! But life is so much easier when I react positively to people. By simply making conversation, being cheerful and talking to people about my appearance, I receive a better reaction than when I have shut off. I also think Jack Oldacres is a positivity cyclist too. So are his parents. Danny told me that when people stare and point at Jack, he waves to them and smiles, and says those starers are his friends. How beautiful - there is a lesson in that for all of us.
Jack's personality is huge, and he is intelligent and a good conversationalist. He charms everyone with his smile and outgoing nature. At his hotel he had made friends with another little boy, and charmed the waiters by taking their photos. I see a lot of me in him, and not just in our looks - he is willing to have a chat, meet new people and have fun. He is also a pocket rocket - with so much energy - again, a trait we share. I think, again like me, he likes the limelight, in a good way, and is often oblivious to the stares. Julie and Danny noticed the stares so much more than Jack and I did.
Today we walked so far through Covent Garden, Leicester Square, Piccadilly Circus and Oxford Street (where we went to an enormous toy shop) and saw lots of performance artists. This one was my favourite.
The golden man was sitting on air! A group of kids stopped to stare, point and comment at me, and I smiled at them, amd encouraged them to look at the gold man as he was far more interesting to look at!
I had a fantastic day and feel richer having met Jack, Julie and Danny. I am quite reluctant to participate heavily in ichthyosis support groups due to the negativity and competition I have experienced. I am so glad I met the Oldacres family - they said to me a religious worker at the hospital told them it is often very special people who are given a gift of a child with a disability, as God - whoever he/she is - knows they can cope. And from meeting Julie and Danny today, and reflecting on my own parents and the brilliant job they did with me (with such limited support when they were brand new to Australia), I wholeheartedly agree.
Jack is beautiful, strong, friendly and outgoing, smart, funny and determined. I came away from today's meeting feeling so fulfilled. I know that we have helped each other. I also felt emotional too - there was so much empathy shared, and I knew I didn't have to prove myself. Julie and Danny were so proud to tell people that today's meeting was a once in a lifetime experience between two people with very rare skin conditions. It felt like family.