Know all the details of treatment against ALS 1:45

(CNN Spanish) ––

 He walks with difficulty, but that doesn't matter to him. The only objective of Jaime Lafita, 61 years old and originally from Getxo, in the north of Spain, is to always reach wherever he intends, even if he is assisted by a walker. An attitude that he has displayed since 2016, when he was diagnosed with amyotrophic lateral sclerosis (ALS).

“He spent practically the first two years without saying a word. He was diagnosed with ALS and he didn't tell anyone,” his friend Gabica, who lends his voice to Lafita, tells CNN, given that he is losing his. “He ate it by himself because he didn't want it to affect his family and those closest to him,” he adds.

It took a while for his closest friends to notice, but they noticed it when they played sports together, like surfing. That's because this neurodegenerative disease causes the loss of nerve cells in the brain and spinal cord that allow the body to move, leading to paralysis. Although, as Lafita acknowledges, the progression of his disease is proving slower than average. In this sense, the Spanish Society of Neurology estimates that the life expectancy of an ALS patient is 3 to 5 years after diagnosis.

• What is amyotrophic lateral sclerosis (ALS)?

“While surfing, I saw that he had less balance and would fall (…) But he was lucky that his character allowed him to accept it,” recalls Gabica.

His character, without a doubt, is special. There is something magnetic about him that captivates everyone who approaches him and meets him. Maybe it's his positive attitude towards life, maybe it's the perennial smile with which he answers any question. Be that as it may, that energy is your best weapon to confront the advance of the disease and you channel it through different projects.

• Do you know what ALS is? Learn about this disease and the progress of an experimental treatment

With the aim of making ALS visible and raising funds for her research, Lafita founded DalecandELA, an association through which she has continually mobilized the support of family, friends, companies and institutions to carry out a multitude of initiatives.

advertising

Among the most striking is the challenge of traveling 200 miles (about 322 kilometers) by sea and 800 kilometers by bicycle from the port of Getxo to Brussels to request more funds for research from the European authorities. In 2022, it climbed thousands of meters to the top of the Teide volcano, in Tenerife, to gain visibility.

From April 9 to 17, it is proposed to travel 650 kilometers on a tandem bicycle through Death Valley, in California, with the same purpose. And, on this occasion, it will have the support of the ALS Network, an organization located on the west coast of the United States that focuses its work on helping the ALS community.

The tandem bicycle that Lafita will take to California. 

It is a proposal that does not arise by chance, Gabica tells us, since the “Valley of Death” is the term that many scientists use to refer to research that, despite being promising, is doomed to extinction due to lack of Of funds.

Jaime Lafita and his tandem partner, Gabica, in front of the Congress of Deputies, in Madrid.

“ALS must be made visible and demand the unique, key, real and possible research to find a cure. A cure or, at least, with a medicine that makes the disease chronic,” says Gabica in the voice of Lafita. “As Jaime says: If it doesn't reach me, I want to do it so that the next generation does not suffer what the ALS community is suffering right now.” A community that, at least in Spain, is made up of around 4,000 people, according to the Spanish Society of Neurology.

But this will not be an easy challenge. Death Valley is known for its extreme climate, and Lafita will have to face five or six hour days on the bike, pedaling. “He says: I don't care, because the alternative to tandem is not going and staying home.”

For this reason, over the last few weeks he has prepared at home, with a stationary bicycle. Added to this is that, with the aim of helping him as much as possible, he will be accompanied by a small group of volunteers from the association, including his son Álvaro, his wife Lourdes, a doctor and a physiotherapist.

• Drug against amyotrophic lateral sclerosis advances thanks to the "Ice Bucket Challenge"

The tandem bicycle with which you will do the tour has been custom made for this occasion. “Jaime will always be on the back of the bicycle, pushing, and several people will take turns in front: Álvaro, his son, who accompanies us on the adventure, and then there are several people among those of us who are riding, so we will take turns.” , says Gabica.

Gabica and Lafita assume that these eight days of travel will not be easy, that there are "risks of all kinds", such as possible falls. “But it's part of the adventure (…) it's part of what motivates him. He has always been like this: combative, adventurous,” reflects Gabica.

In any case, Lafita is ready to enjoy, because that is also an obligatory part of the adventure. As he himself tells us, ALS may weaken him physically, but it will not give him the pleasure of breaking him down emotionally.

Diseasesamyotrophic lateralclerosis