Monday, February 6, 2023

Seville boy Manuel battles a rare disease

If there’s anything about football, it’s the ability to go beyond the sport itself and expose the harsh realities of our society. Also condemned him. This is the case of Manuel Pérez Solano, a child from Seville who has a rare disease whose medicine is so expensive, now in Spain, that his parents can no longer afford it. From 16 euros a box has gone up to 1,600 euros, according to testimony from his mother, Encarnacion Solano, and his father, Manuel Perez, who accompanied the young child to the Games City.

This reality is beyond comprehension. And there Sevilla wanted to extend solidarity support to the little child, who is seeing how disease shows its worst face again When he has stopped taking medicine now due to financial inability of his parents.



“We started noticing it when I was three. The first diagnosis was given to us in June last year. It’s a rare disease called non-dystrophic myotonia congenita.” It is rare in adults, and more rare in children“, says Encarnación Solano.

Problems arose with the marketing of mexiletine in Spain. “Manuel needs a drug that was brought to him from Canada, mexiletine, and he is not taking it, because that treatment is marketed under another name in Spain and costs 16 euro three little bottles for three months, now The price for a box of 28 capsules is 16.39 Euro heres. And by the time he stopped taking it we saw a sea change. He can’t run or climb stairs anymore… even the parts he didn’t have before get stuck, his mouth, his tongue…”, says the mother.

The parents also wrote to the Royal House, which replied that it would transfer it to the Ministry of Health. “If before it came from abroad and was worth X, it is unacceptable that now a box that lasts a week costs 1,600 euros. What salary can support that?”The father asks Manuel Perez, who reports that he has created a page to collect signatures and restore the treatment. “We don’t want money, we want to return what we had, what they have taken from us,” he said.

Manuel Pérez was acquired by Sevilla footballers, from domestic players who work their way up to professionals with the first team. Oliver Torres, Jon Jordan, Rakitic, Dimitrovic, Gudelj, Fernando, Jesus Navas… even Sampaoli. Everyone is signing a shirt with the motto “Never give up”. “You read what it says, okay?” Says the mother, between resignation and hope in the face of this harsh and unbelievable reality.

Nation World News Desk
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