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Alvaro he is 11 years old and suffers Spinal Muscular Atrophy (SMA)a degenerative disease that causes him to be practically tied at all times to a chair. Now you need a new one, but the device you need costs more than €18,000.
«Due to the characteristics of his disease, just any one is not worth it. We have already paid for one part, but we do not have the other. The Community of Madrid gives us 6,150 euros, which have not yet arrived, but how do we get the rest?” asks Ana, the child’s mother. For this reason, the family and the association
Alvaro’s little world He has been organizing events to raise money and this Saturday he is holding a charity raffle in Algete (Madrid).
«Álvaro is getting quite worse»his mother tells ABC with a lump in her throat.
He currently uses a “pretty basic” third-hand chair that has outgrown him, which doesn’t help his evolution. Being a degenerative disease, it gets worse and worse despite treatment. And to this evolution we must add carrying an outdated chair. However, «he already has 60% scoliosis, pain and is losing respiratory capacity. Her back is gone », explains Ana.
Everything there is on Saturday 25 in Algete!@aytodealgete#AlgeteSinBarreras25Jun#fiesta25JunAlgeteInclusive#BeautifulPeopleInAlgetepic.twitter.com/UHBVXttzOv
– Álvaro’s fight (@elmundodeAlvaro) June 22, 2022
But, why is the chair so expensive? This is what Ana is constantly asked, while being told that there are cheaper options. In the first place, the mother points out that it is not just the chair, but everything that she has to carry. “It is as if you bought a Mercedes but when you enter you realize that it does not have a steering wheel or a seat and you have to buy it yes or yes because if not, you cannot drive,” she points out.
Several examples: the belt for the chair costs 150 euros, that the chair has lights for when it is night and you have to go on the road because there are inaccessible areas, 570 euros; that the chair can be knocked down and thus not having to lie on the ground in public spaces to change it, more than 2,000 euros; and the seat itself 2,000 euros.
«Everything is a sum and continues. And the Community of Madrid has refused to subsidize some of these parts because the established period has not passed since the previous one,” Ana denounces.
– Álvaro’s fight (@elmundodeAlvaro) June 22, 2022
a problem of many
And the chair is just one of the problems the family has. Right now Álvaro is in a clinical trial with Risdiplam“a ray of hope” because it is much safer than the other possible treatment here in Spain, but “it does not look like the Government is going to admit it.”
«The other option we have is a treatment for injections in the marrow every four months with which they have to take out liquid and put the medicine into you. Imagine the danger this entails. In addition, most patients cannot opt for this method because they cannot be pricked in the marrow as they have already had back surgery”, says Ana.
“Social security pays for the treatments, which are very expensive. The problem is that they ask you to keep going until a point that is impossible. They ask you to always advance in a disease that is degenerative. It goes against nature», insist.
To all these problems are added those related to education, accessibility, the lack of chips for an exoskeleton appropriate to their size. “It’s exhausting, but if people contribute their grain of sand both in this raffle and in any other solidarity event that we organize, it helps a lot,” concludes Ana.
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George is Digismak’s reported cum editor with 13 years of experience in Journalism