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The first time little JJ Finnegan walked past a mirror at home and said to his parents, ‘I don’t think I’m beautiful,’ it broke their hearts.
The five-year-old boy has ichthyosis, a rare genetic skin condition that means his body is unable to shed skin cells, creating thick, painful layers of dead skin on his body.
His father, Afghanistan Scots Guards veteran Jordan Finnegan, told MailOnline he is bathed with emollients twice a day to give him some relief, but there is no known cure and they are now looking at alternative treatments.
JJ Finnegan suffers from ichthyosis, a rare condition that prevents his skin from shedding
JJ broke his parents’ hearts when he said ‘I don’t think I’m beautiful’ upon seeing his reflection
Finnegan has organized two charity half marathon races in an attempt to raise £6,000 purchase a specially designed hydrotherapy bath called a nano-bubble that will help treat the condition.
His priority is to make sure that JJ knows that he is perfect just the way he is.
Since school started, it has become more apparent to JJ that he looks different from his peers, and he began to question his condition more after his peers noticed his skin.
Mr Finnegan said: “Obviously other children are curious, but sometimes he has been upset because his skin has been touched and asked why it looks different.”
“It breaks your heart when he comes home and says he wants to be like other kids. I want him to see that he is beautiful and perfect just the way he is.
Ichthyosis, a rare genetic skin condition, prevents the body from shedding skin cells, creating thick, painful layers of dead skin on the body.
JJ’s condition was inherited in utero. It is caused by a mutated gene, which leaves babies unable to make enough of the protein that helps their skin renew itself.
Newborn JJ with parents Hannah and Jordan Finnegan. They had no idea he had the condition until he was born, when he came out ‘raw red’ and ‘looking like a burn victim’.
JJ wears special vests to keep cool and ultra-strong sunscreen to protect himself.
And while little JJ loves school, his parents are troubled by the ‘heartbreaking’ thought that he was being ‘bullied’, which is how he described the situation after his second day.
“He stopped and looked in the mirrors and said he doesn’t think he’s beautiful because of his skin,” Finnegan said.
“To me and his family, he’s just normal, but to a lot of kids he looks different.”
The condition also prevents JJ from sweating, leaving him vulnerable to overheating.
He wears special vests to keep cool and ultra-strong sunscreen for protection.
JJ with his father Jordan Finnegan, who was devastated to hear his son tell him he was being bullied at school.
The condition was inherited in the womb and is caused by a mutated gene that leaves the baby unable to make enough of the protein that helps skin renew itself.
They had no idea she could have the condition until she was born, when she came out ‘raw red’ and ‘looking like a burn victim’.
On a day-to-day basis, JJ’s skin is “extremely dry, uncomfortable, and in most cases sore to the touch.”
Every morning, she lathers up with a thick layer of 50/50 paraffin oil. For most people, Finnegan says, this would be like coating them in a thick layer of Vaseline. But for JJ, it is completely absorbed in 30 minutes.
The machine the family hopes to purchase with the donated funds creates microbubbles in the bathtub 100 times smaller than a Jacuzzi bubble.
They can penetrate dead skin cells, making it easier and less painful for JJ’s parents to remove dead skin buildup.
“We’re praying that we can get our hands on it,” Finnegan said.
She could potentially take two hours out of her daily routine to care for JJ’s skin, freeing up more time for her to ‘play and do her homework’.
They have seen the results of the treatment in support groups and online, and are hopeful that this will bring relief to JJ.
Finnegan hopes the two half marathons he’s running this year will help them raise the money they need. So far, they have raised over £4,400 on GoFundMe.
First, Mr Finnegan will run an evening half marathon known as ‘The Deer Stalker’ across mountains and rivers, followed by the Glencoe Half Marathon later in the year.