04 May 2013

Ichthyosis Awareness Month: Jack's story ~ a cheeky smile and can-do attitude.

I met little Jack Oldacres and his parents in London last year. It was one of my favourites days abroad. You can read about our meeting here. I love seeing photos of his progress on Facebook - he's at nursery school now and plays football on the weekends. Jack's Dad, Danny, wrote this for the Ichthyosis Awareness Month blog project. His parents and local community do amazing work in raising money for Netherton's Syndrome research.

"Jack was born on the 23rd of August 2008, and struggled to hold his temperature and was moved into special care baby unit. Over the next few days his skin became red and inflamed all over his body. Doctors had no idea what was happening after various examinations to no prevail. Jack went to Birmingham Children’s Hospital where due to his hair being a bamboo style they said he may have Netherton’s Syndrome, a rare and painful skin condition due to a dysfunctional gene which means a protein deficiency, so that his skin does not form properly.

Jack then spent the next 6 months in hospital getting numerous infections including septicaemia, having to have 50-50 cream applied every 1-3 hrs. After over 6 months of constant hospital care Jack was allowed to come home, but with limited visitors due to risk of infection.

Once Jack was strong enough, he was allowed out and that was when we started to see the other side - the stares, comments and negativity to this unknown condition.

Over the last 4 years we have set up a support network on Facebook and also a fund for research at Great Ormond Street Children’s Hospital in London raising £20,000 in funds.

 

Jack is now in full time school although he has a constant 1-1 teacher to support his physical needs, Jack also has to be bathed twice a day for up to 1 hour 30min at a time, to soak and peal off the dead skin this is very painful for him.

Jack also has to be creamed every 3-4 hours and drink plenty of fluids due to dehydration.

Jack does not sleep very well due to constant ear infections and dehydration, but he is an active 4 year old with a cheeky smile and can do attitude.

More information on his condition can be found here."

 


This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

10 comments:

  1. Aw, look at him in his little suit!! He looks right at home in front of the goals too. I'm glad to hear Jack is doing so well :)

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    1. That little suit is the cutest! Jack is doing so well and I cannot wait to see him soon.

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  2. Jack is adorable! So glad that you two had the chance to meet in real life.

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    1. Me too :) he was a ball of energy when I met him!

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  3. Oh he is just precious. I am really enjoying everyone sharing their stories. Until I met you I had no idea about this condition at all.

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    1. Thank you so much - I am glad it's reaching new people :)

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  4. what a little cutie! I am so glad you guys met.

    Hope you are well xxx

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    1. Isn't he just?! I'm so glad he and I met too.
      I'm well thank you FF - and I hope you are too x

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  5. Hi Carly! I just read your comment on my blog and thought I'd pop in... and then I realised I saw you on TV yesterday! It was an interview with some young kids about ChiPS :) I actually thought as I watched the segment that I'd read your blog before, and meant at the time to see whether I could find you to let you know that I thought it was a great piece :)

    Thanks for your comment, and I'll be sure to check back in again :)

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    1. Thanks Erin! I used to mentor the Chippers and it was lovely to talk to them on No Limits again. Nice to know the TV show is being watched :)

      Thanks for stopping by :)

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