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.