A man who is stuck in the body of a 12-year-old at the age of 25 has described the constant pain he is living from the rare disorder.
Tomasz Nadolski, from Olesnica in south-west Poland, suffers from a genetic condition known as Fabry disease, which affects the kidneys, heart and skin. It also causes a build-up of a type of fat that means the body can’t metabolise fatty molecules.
He said: ‘I am 25 years old and I would like to look like a man of my age. I hate this boy who I see every day in the mirror, because it is not me.’
When he was seven, Tomasz began vomiting after every meal and started suffering from pains in his stomach, hands and feet.
He said: ‘Friends at school would say: “Skeletor, you’ve left Auschwitz!”‘
He says the disease has strained his relationship with his family because they treat like a child, not as the 25-year-old man he is (Picture: CEN)
Doctors were unable to work out what was wrong with him and suspected his problems could be mental rather than physical, and recommended he eat more. He says the condition has made his relatives still treat him as a child, straining their relationship.
He said: ‘When I’m at home, I’m just sitting in my room and spending my time alone.
‘I feel lonely and I lack the support of my family and this is how it has been for many years. The disease has destroyed our family relationship.’
And he says that the illness also affects his everyday life as people refuse to accept his real age.
‘I often suffer sad situations. When I show the ID card in the office or if the police stop me, they accuse me of having a fake one,’ he said.
The disorder leaves him in constant agony, and requires him to be attached to a drip 20 hours a days fo he can survive (Picture: CEN)
He lives on benefits worth the equivalent of £160 a month while the medicine costs nearly £170,000 a year. Fortunately, the manufacturer of the expensive treatment for the disease has agreed to provide him with the drug for free.
His severe stomach problems mean he cannot eat and he has to be attached to a drip 20 hours a day so he can take in enough nourishment.
He also needs painkillers, including morphine patches, to help him cope with the pain he feels. His feet are so deformed that he has to wear special shoes.
He explained: ‘I feel pain in my joints, bones, muscles. Every inch of my body hurts me. I am not able to sleep and live normally.’