15 June 2010

Jack Oldacres - Netherton's Syndrome

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.

Jack's website
The Mirror article


  1. What a beautiful family. It sounds like they are doing an amazing job.

  2. What an adorable little boy. Look at those eyes. With wonderful parents like that hopefully he will have an amazing life regardless of his disability. I truly wish people would not be so ridiculously cruel, for the sake of people that I love, you Carly, this little boy and all people that are considered "different" (when in reality, are we not all different from each other?). It makes me really mad.

  3. That's a really good post Carly, you are doing important work in educating us about this issue, I am full of respect and admiration for you. Go girl go!* Bx *just trying to sound cool, it's not working is it? oh well..

  4. Hey everyone thanks for opening your minds and hearts to support little Jack.

  5. ...Not that your minds and hearts weren't open before, but you know what I mean. It's great that people have greater awareness about illnesses and disabilities through my blog and others.

  6. It truly breaks my heart that that kind of treatment would happen to someone so young. Not that it should happen at all, of course. I didn't start getting teased and stared at until I reached high school, or at least I didn't notice it until then, but that was hard enough. The part about Jack's dad jokingly teasing him about his condition made me cry - not because he would do that, but because I think it's such a good idea and it's so sad that it has to come to that.

    Thanks for such a wonderful post, Carly.

  7. Your post is wonderful. My son's disability (Autism) is not physically apparent until he loses it in public, starts "stimming" (spinning around to calm himself etc) or can't be understood when talking (among many other issues). I get how the parents in the article feel. For a long,long time I felt so over-protective and just wanted to go around and beat everyone up who teased my son or didn't include him because he was "strange" or couldn't communicate. Which a) isn't practical and b) would have ended up with me arrested. Like Julie, I've broken down in public. Once so bad due to an argument in a shopping centre over my son's "bad behaviour" (he lost his cool in a supermarket queue), that every checkout line stopped to stare as I tried to explain his Autism through my tears.

    I no longer burst into tears any more. Thank god! LOL I eventually got over my anger and realised the only way forward was to simply educate others. Much the way you've done. I really admire you and your blog for doing that.

    As you have no doubt experienced kids can be so utterly cruel, especially when the disability is physical. My son has been excluded from birthday parties and although he's oblivious, it hurts to think others can be so narrow minded and hurtful. I've shed more tears than my son has.

    Also, my mother was also born with a physical disability (so my interest is two-fold). Seeing her get rejected for jobs, discriminated against, stared at, under-estimated and reduced to tears made me so angry. Ironically it was her strength to prove the world wrong that made me stronger when my son was diagnosed. It breaks my heart to read articles about ignorance in this day and age.

    It is great to read your blog and stories about others who are doing something to change the situation for everyone.

    Sorry for the long winded comment. Obviously like you, it is a subject very close to my heart.

  8. Great post, Carly. Thanks for introducing us to Jack, he is too cute! While the zoo story saddens me, unfortunately it doesn't surprise me. I am so hoping that by sharing the journey of a typical, spunky little service puppy, people might begin to understand a little more about the individuals who require the assistance these dogs provide.

  9. he is nice boy,but i don't like father idea to make a bad for jack and be rude as others have been by him.that is cruel. in resultat this little,nice boy will knock in himself and maybe start don't like his parents and he couldn't fight with others strangers in future.that is very important to feel the understood and soft from the nearest people as parents and then he too will feel good and take and don't be full of complexe.

  10. This was a nice post. I can very much relate to this since I was also born with Netherton Syndrome. I have a younger sister who is also affected by this. I actually agree with the post above me. The idea of the father I know is meant very nice... but it's true... he needs full acceptance and love from both parents without toughening up. He will have to toughen up not matter what and to be able to fall back on people who never tease him and love him for who he is will be the best way to do that.
    I'm 28 now and still have my days when it's hard to take and others I can just shrug it off. But I'm working on it.


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