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Paz Arizti tells us the situation they are living due to an inopportune and aggressive bacteria that has colonized the body of their son Dani.
The film “Five feet apart” premieres this Friday, September 13 in the main cinemas in Spain.
How many times have we heard the importance of that comforting and not very long hug, of about 5 seconds, to charge energy and restore the mood. People with Cystic Fibrosis are prohibited; they shouldn’t hug each other and much less kiss each other.
This is what the film is about to premiere in Spain “Five feet apart” (Justin Baldoni). In it, Stella (Haley Lu Richardson) and Will (Cole Sprouse) are two teenagers who are in a hospital. Both suffer cystic fibrosis and have to avoid approaching at all costs. Although very different, they know each other and begin to fall in love with each other. However, having the same disease can not approach less than five feet, which makes their romance a complicated love that they do not know very well how to deal with.
Cystic Fibrosis is a degenerative, genetic and serious disease that mainly affects the respiratory and digestive systems, which deteriorate as they become blocked by the accumulation of mucus that is not eliminated correctly and that becomes infected and inflamed organs affected. There are more than 2000 mutations of this disease. People with Cystic Fibrosis or CF, as it is abbreviated, should avoid co-infecting with the microorganisms of other people with the same disease, since these are usually resistant to antibiotics and extremely difficult to treat.
Dani’s case is not a movie case. It is a real case. Dani, my son, is a 17 year old boy, who lives in Palma de Mallorca and has CF. He became infected with a Mycobacteria at the beginning of this year and since then, due to the policy of prevention of cross infections among people with CF, he should not only stay within two meters of any other person with CF, but both he, his father and I must always remain at a distance from other people with the pathology, as well as their relatives. We have been in “quarantine” since February 2019. It is a particularly complicated case, since it is a super bacteria, resistant to practically all antibiotics.
We find it difficult not to be able to access the headquarters of the association, as it is also not to be able to represent the entity, as President of the Association.
We miss that human touch now that we are going through a difficult season, since the said bacterium is depleting Dani of much of his respiratory and physical capacity.
Some people do not understand that you cannot even shake hands, but we believe that in this respect the movie ‘Two meters from you’, although fiction, reflects quite well the situation faced by families with CF. We feel very identified with Stella and her best friend Poe, who can’t get close to anything they want or hug.
Even so, we are very fortunate to be living in the Balearic Islands, where both the doctors of the Son Espases Hospital and the Cystic Fibrosis Association of the Balearics and the Respiralia Foundation are turning to us. The Association is bringing us home and online services.
Our house is like an infectious hospital. The physical therapists and osteopaths of the entity come home and treat Dani after putting on a robe, mask, gloves…”
Dani receives two weekly physiotherapy sessions and another of osteopathy. In addition, he is in contact with the physical trainer via online.
Due to its delicate situation, Dani has been able to access the new medicines since June. The doctors, pharmacy, hospital management and local Health Ministry approved the use of Symkevi as a compassionate medication in this case. Since then Dani takes one pill in the morning and another at night. It has slowed down lung capacity and even begins to rise shyly.
This is relatively good news, although Dani is not yet out of danger, since Mycobacteria is still present in his lungs. As president of the Association, I think that my child should not be given this medicine as a kind of favor treatment, but that both Orkambi and Symkevi are medicines approved by the European Medicines Agency (EMA) and the Spanish Medicines Agency and Health Products (AEMPS), but that do not reach people with CF in Spain because the Ministry of Health and the Vertex Pharmaceuticals laboratory have not yet reached an agreement regarding their price.
Today, the CF Association of the Balearics and the Respiralia Foundation serve 70 people and at least 15 of them could benefit from these medications. We have already lost one life since we await approval and at least two youngsters have had to go to transplant. In a society like ours it should never be acceptable to put a price on people’s lives. From the CF Association of the Balearics and the Respiralia Foundation we demand access to the latest treatments of the disease for all those who need them.
I encourage you to fill the cinemas and watch the movie “Two meters from you”, which will bring you the disease and show you some of the difficulties that people with CF live daily. Share this video to encourage people around you to see it.
Paz Arizti, Daniel’s mother and president of the Cystic Fibrosis Association of the Balearics.
