I read this article this morning. It’s about a little boy with Netherton’s Syndrome (the same variant of ichthyosis I have).
Jack Oldacres is 21 months old and lives in the UK. His parents, Daniel and Julie, are on a mission to educate people about Netherton’s Syndrome, to get Jack the recognition he deserves. Isn’t Jack beautiful?
It’s one of the better news articles I’ve seen about ichthyosis. I am so pleased of the sensitivity shown in telling Jack’s story.
There were two parts of this article that brought tears to my eyes:
Daniel, 32, says: “I want him to walk through town and people to think ‘There’s Jack’, not ‘What’s wrong with that red baby?’”
“We went to Twycross Zoo and a coachload of school kids – teenagers who were old enough to know better – started shouting and pointing.
“They were more interested in Jack than the animals. We were stuck there for 40 minutes and by the end Julie was in floods of tears. It ruined our day.”
Daniel admits with a grimace that he is even planning to joke about Jack’s condition to prepare him for other children’s cruel taunts.
“That way he’ll be able to say, my dad says worse than that, and carry on with what he’s doing,” he explains with stoney-faced resolution.
Jack’s story resonated with me because of my own experiences.
It saddened me to read of the heartlessness of the teens taunting Jack at the zoo. How’s that for cruelty – a little boy at the zoo, doing what he loves, and having a busload of teens take more interest in him than the animals. It would have been heartbreaking for his parents. Jack’s Dad is right – they are old enough to know better.
As for toughening Jack up, preparing him for the teasing that may come – it breaks my heart that this is the reality of Jack’s life. His parents are doing an amazing job in raising Jack, and I think he’s going to grow up robust and compassionate.
But we shouldn’t have to prepare for teasing or have our days ruined by stares, taunts and questions. I wish people could just accept diversity.
Jack’s parents are doing amazing things in raising awareness about Netherton’s Syndrome – they just took part in a charity walk, and held a party to raise funds for research.
I encourage you to read more about Jack and educate people you know about the impacts of making assumptions about others’ appearances.