Álex Díaz is 46 years old and since the age of two – when he started falling more than usual – it was already suspected that he might suffer from spinal muscular atrophy (SMA), a neuromuscular diseasegenetic and hereditary which affects 1 in 10,000 people. In his case, as it was type 3, the mildest, the diagnosis was not confirmed until he was eight years old, and it was confirmed in 1995, when the mutation causing the disease was identified.
Their parents were both carriers without knowing it, an essential condition for the development of the disease. In fact, her brother is not even a carrier and her daughter, although she is, will not develop it and can prevent her from inheriting it if she has children, which she considers an advantage, because “most people who carry a genetic disease don’t know it.”
Know that you have a degenerative disease He never stopped his projects, at the age of 21 he founded a company and when he had to leave it for health reasons, he focused on sport, where he achieved great achievements at the international level. In addition, he still has time to participate in campaigns, like the one created jointly by Roche and the Spinal Muscular Atrophy Foundation (FundAME), of which he is a patron. In the ‘lAMElodía’music is used – a theme composed by the artist Travis Birds to tell the experience of those living with the disease, “having type 3, SMA allowed me to walk until I was 21, but it never stopped me from doing anything. The only adjustment I needed at the public school I went to was that they let me in early so I could get up the stairs ahead of time. Then I studied computer engineering, started a software engineering company with other colleagues, got married, had a daughter… I mean, I was able to lead a pretty normal life.
Until he was 16 or 17, although he already had difficulty walking, he wasn’t really aware that it was degenerative and that’s when he really appreciated what it meant to take a step: “I remember going for a walk with the dog and thinking, ‘I’m going to be conscious of every step I take because maybe one day I won’t be able to take it anymore.’
And that’s what he did, and ever since make the most of your life“As the disease progressed, I adapted, but I never stopped doing things, I’m a fidgety jerk, and that’s thanks to my parents.” Parents who, even though their hearts sank every time he went out alone because “only with the blow of the wind he could fall”, never overprotected him, “I immediately normalized him, and since I was very sociable, I was never intimidated or made fun of, the illness never came back to me“, he assures.
In fact, when we called him on the phone, we caught him driving alone from Murcia: “for me, lifting a glass of water is like lifting a 5 kg weight for another person, but I drive with the joystickI went to a high performance center in Murcia just to train for a few days. “If I had been too overprotected, I probably wouldn’t do it.”
As the disease progressed I adapted, but I never stopped doing things, I’m a restless jerk
His passion for sport
With the same daring character as in adolescence, Álex devoted himself to adapted sports as soon as he sat in a wheelchair, at 21 years old. First it was wheelchair hockey, then boccia: “I sold my part of the business and now I’m totally focused on being a professional athlete. I spent 15 years with hockey and even became captain of the Spanish team. In 2023 I closed the scene and focused on boccia and since September of this year, I have been a starter in the Spanish national team,” he says proudly.
In just two international appearances, he has won two bronze medals – one in the individual and one in the pairs – and his next goal is to reach the Paralympic Games in Los Angeles in 2028.
To achieve this, he trains four days a week, both for the practical and theoretical part, and lots of rehabilitation to try to stop the degeneration as much as possible.
For him, sport is not only competition, it is also going face challengeslike those he faces daily, “sport is something super enriching for any person, but even more so when we have a disability. All the difficulties I have encountered in life, I extrapolate them to sport, and vice versa. I think ‘if I achieved other totally impossible things, I can win this match… and vice versa… sport helps us to improve.’
Sport gives him the impetus he needs to face his daily life, a day full of obstacles, because he is a dependent person who needs help to get up, get dressed, go to the toilet, shower… but “once seated, I am independent”.
In addition, he has time to study, as a hobby, a degree in psychology and he devotes himself entirely to patron of FundAMEthe Spinal Muscular Atrophy Foundation, where it fights to improve the lives of people affected by the disease on three fronts: research, access to treatments and support for families.
From FudAME, he assures that they have achieved great things, including access to treatments for patients, “we help those affected to access treatments, we carry out trials in Spain, we obtain compassionate uses of treatments…”, he says proudly.
All the difficulties I have encountered in life, I extrapolate them to sport, and vice versa. I think that “if I achieved other totally impossible things, I can win this match…” and vice versa
In this sense, it is also optimistic, since research bears fruit and little by little treatments appear that improve and extend life, “there are currently three treatments approved in Spain. Two of them are intended to allow us to produce the protein that we lack, and they are effective especially in children. In type 1, which is the most serious and which has very little life expectancy, there are children of 5 or 6 years old capable of even taking a step. In adults, where there has already been degeneration, the treatments are not as effective “They seem to slow down progress, but they are not a panacea,” he admits.
Their hopes are then placed in research and future treatments that they finally achieve “a definitive cure”.
But while that’s happening, they’re fighting day after day to get the treatments to patients – which is sometimes difficult because they’re so expensive – and for everything they need to improve their quality of life to arrive as well. “we need a lot of social support, a personal assistant We are now light years ahead when compared to other European countries. For the moment, a few hours have been granted to me, but they have not yet arrived and these hours are totally insufficient to cover my needs. Ultimately the reality is that We need to support families and pay for this privately.. For example, to have a car suitable for driving with a joystick, you practically have to take out a loan. Not to mention the accompanying products, which are very expensive and many are not funded, but your independence depends on it, and the same for electric chairs, and these are not whims.
Another fight that they have opened is to enter into the ALS law, because the care and economic needs are the same, “our quality of life, unfortunately, now It depends on what we can spend in technical aids and personal assistance,” he insists.
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