If he falls out of bed, the fire brigade must be called. A restrictive diet does not help her, she is getting fat from a glass of water. Magda fights a rare genetic disease – Prader-Willi syndrome.
In people struggling with PWS, the pituitary gland does not send signals about satiety. It causes a constant feeling of hunger. Patients put on weight at an alarming rate, even on a restrictive diet. Magda’s story in the video below.
Magda’s story
The disease is asymptomatic in infancy. After birth, Magda did not differ from healthy children.
– When I took it in my arms, I was the happiest in the world. She was tiny and lovely. She had long, platinum hair. There was nothing that worried us – recalls Katarzyna Mróz.
The girl was not diagnosed with the disease until she was 13 years old. It was too late to start GH therapy, which, if given in advance, helps stabilize metabolism.
Magda is now 28 years old and weighs over 200 kg.
– Once I saw a picture of a person with PWS. It was a grown man. I said that Magda will never look like that. I thought it was impossible for a man to gain so much weight. But despite diets and guarding, it is the same – admits Katarzyna.
“The whole world in bed”
Magda has not left home for several years. Normal clothes are gone. The shoes cannot be matched. The girl can only lie down.
– All her world is in bed. She is dependent on oxygen. Every step she takes is a terrible effort. I often wonder how she still manages – Magda’s mother laments.
The situation has gotten worse recently. The bed has become too narrow.
– When Magda fell off it, we were not able to pick her up. We called the fire brigade and ambulance. They helped us put her back on the bed – says Katarzyna. And she points out that Magda has already fallen out of bed three times since this event.
Magda’s relatives cannot afford to buy a new, specialized bed. Ms Katarzyna takes care not only of her daughter, but also of her son who has Down’s syndrome. And for several months now also his sick mother.
Doctors refuse to come
Prader-Willi syndrome is an incurable disease. Magda’s metabolism is disturbed to such an extent that weight gain even causes drinking a glass of water.
– A child is brought up for 27 years and it can leave at any time. It is a tragedy, indescribable – says the desperate father of Magda.
Magda is a prisoner of her own body. Huge overweight led to respiratory and circulatory failure. The girl also has kidney problems and advanced diabetes. A year ago, a growth appeared on her body. It grows all the time and causes great pain when the girl tries to sit up.
– I called the doctors, but they all refuse to come. She realizes that everyone is afraid that the sight of her scares people away, but she is a human, she feels and should not suffer like this. Nobody deserves it – emphasizes Katarzyna Mróz.
“There is a spark of hope”
After the intervention, NOTES! Dr. Stanisław Leśniak came to Magda. He is an experienced surgeon who specializes in performing surgeries on people with third degree obesity.
– Magda does not qualify for general anesthesia, and the extent of the tumor precludes the possibility of surgery. Perhaps a harness can be made to support the abdomen. This will help with hygiene, reduce inflammation, and thus reduce pain – he said after examining Magda.
The doctor’s visit meant a lot to Magda. A smile appeared on her face for the first time in a long time.
– There is a glimmer of hope. In the end, there was someone who became interested and will help me – ends the girl.
People who want to help Magda and her family can contact Ms Katarzyna Mróz. We will provide interested parties with a telephone number.
At this address Dzieciom.pl/podopieczni/16511, a fundraiser for Magda is carried out.