Tired of being abused in the street, parents of boy with rar

[TrueBlueTerrier]

Tired of being abused in the street, parents of boy with rare skin condition launch research fund to help educate public

Jack has Netherton's syndrome the symptoms of which include chronic skin inflammation, severe dehydration and stunted growth
'We decided we'd rather try and educate people about the disease than get angry or upset at what they say'

http://www.dailymail.co.uk/health/artic ... ublic.html" onclick="window.open(this.href);return false;

The parents of a child suffering from a rare skin disorder have launched an initiative to educate the public after they were continually abused in the street.

Jack Oldacres, the son Danny, 32, and Julie, 38, was born with Netherton's syndrome, which is characterised by chronic skin inflammation.

After three years of being taunted and blamed for their son's burnt appearance the couple from Nuneaton have set up the first dedicated fund to further research into the little-known condition at the University College in London.

Over sixteen months the family have raised £14,000 for their new fund - far more than they had expected to.

They said that the amount is more than has ever been donated to the cause over the past nine years.

Danny, who works for the Royal Mail, added: 'We decided we'd rather try and educate people about the disease than get angry or upset at what they say.'
The years of painstaking care have meant Jack has been able to start at nursery and is die to start school next year

The years of painstaking care have meant Jack has been able to start at nursery and is due to start school next year

The condition is caused by damage in a gene children are born with. This gene controls the formation of a protein in the skin and without it the skin rejects certain types of cells resulting in flaking, red skin.

Jack, who was born five weeks premature by emergency Caesarean weighing 4lbs 5oz, spent the first six months of his life in hospital with doctors and nurses keeping him isolated from any infections and diseases that could easily penetrate his fragile skin.

Before he was one year old, he had contracted MRSA, suffered blood poisoning, septicaemia and bronchitis, and his heart had stopped three times.

But years of painstaking care have meant Jack, now aged three, has been able to start at nursery and is due to start school next year.

Danny, whose wife had lost two babies to miscarriage and one ectopic pregnancy before Jack arrived, said: 'He just loves it. His time there has to be very controlled but he is making friends.

'I went into the school to do a talk to educate people more about why Jack looks like he does, as soon as I'd done that everyone wanted to be his friends.

'He's special to the other kids so they all wanted to know more about him.'

The family have appealed for more people who have the condition so that further research can be carried out.

There is currently no known cure for the life-threatening disease but there are several things that can be done to relieve the symptoms such as moisturising, using anti-infective treatments and topical steroids.

For more information on the campaign visit http://www.nethertonsyndrome.com" onclick="window.open(this.href);return false;

[POSTMAN]

The parents of a child suffering from a rare skin disorder have launched an initiative to educate the public after they were continually abused in the street.

What is society coming to ffs.

[Straight4ward]

The parents of a child suffering from a rare skin disorder have launched an initiative to educate the public after they were continually abused in the street.

What is society coming to ffs.

This kind of ignorant, intolerant behaviour has been with us for centuries.
What is so sad is that we appear to have made so little progress.