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The family that's facing ALS with faith

AMPELA

@luciacapape | Instagram | Fair Use

Benito Rodríguez - published on 11/11/20

They're praising God, even in suffering, and now this brave family is asking others to join in their fight.

“You either embrace suffering or you don’t. And when you decide to embrace it, you discover that it’s a gift.” These are the words of Lucía Capapé, 38, a philologist, teacher, and mother of 5 children between 6 and 15 years old. She has chosen to embrace the suffering that has invaded the life of her family.

Her husband, Miguel Pérez, 40, an industrial engineer by training and the director of a school in Seville, was diagnosed with ALS (amyotrophic lateral sclerosis) less than two years ago. The two have embraced their cross so wholeheartedly that they have become an inspiration to those around them. On September 10, 2020, Capapé wrote:

We’re fundamentally thankful for the Faith, which pushes us to see this situation through God’s eyes. We’ve done nothing to deserve this gift that allows us to live life with a different perspective and which, without a doubt, brings us true and profound happiness.

Phrases as powerful as this one accompany the photos that go up on her Instagram account (@luciacapape), showing a reality completely unlike much of the superficiality found on social networks. The two look like they belong on a magazine cover, but the message they transmit is even more beautiful.

View this post on Instagram

A post shared by Lucía Capapé (@luciacapape)

They’re a family that has embraced suffering. They have let themselves be embraced by God, by their extended family, and by their friends. “Thank you for all the people who accompany us on this path which, hand in hand, he and I travel towards the goal of Heaven,” Capapé writes.

Because that is the goal: Heaven. The path has become steep. After less than two years of illness, Miguel can no longer walk. He has lost his speech. He communicates through an app that uses a voice synthesizer. He can no longer laugh with that powerful laughter so characteristic of him, which was contagious to those around him.

But through it all, the two grow in empathy, and in more intense communication. “Daily life has put us in a situation of learning how to interpret looks, gestures, signs, smiles and sighs, now that Miguel’s voice is missing,” Capapé writes.


ALOYSIUS SCHWARTZ

Read more:
Meet Father Al, a soon-to-be saint who had ALS

Lucia does not hide the hardship of living with the disease. She is open about the moments when their strength wains, the days of tears and of searching for comfort. Perhaps ironically, it is the physically weakest of them all, Miguel, who gives strength to his family. Lucía posted a photo of Miguel asleep, and she wrote this commentary directed to him:

While you sleep I look at you in admiration of your strength. I look at you, waiting for a complaint to come from your lips, to make me feel that I am not so wretched because of my own continuous complaints. And I think, ‘My God, this cannot be improvised. One must train for life’s setbacks. It’s worth carrying small crosses to know how to carry the heaviest one gallantly.’ While you are sleeping, I look at you in admiration of the elegance with which you carry the limitations of body and soul. An attractive invalid with a contagious smile … While you sleep I envy the serenity with which you give yourself to Morpheus’ arms … a reflection of the peace with capital letters that dwells in you. And, by contrast, I find myself restless, fearful …

According to an interview that Lucía gave to Spanish periodical ABC (which she shared on Instagram), Miguel is a tremendously positive person. “He thinks that we’re here on the way to another life and that we don’t get to heaven on a feather bed, and each one of us has to earn heaven some way.” He has always had a strong moral compass that provokes admiration.

Last September, Miguel and Lucia celebrated their 15th wedding anniversary with a private Mass in their living room. They were able to relive their journey as a couple united in one flesh, in health and in sickness, united in Christ: “I have tried to focus more on giving thanks than on what to ask for, because He knows better than we do what we carry in our heads and hearts,” wrote Lucía.

That is why she has taught her children to pray “for their father to be healed, or for what is best for him to happen,” she told ABC. They know how to differentiate between their own very human desire and God’s transcendental plan for their lives. And they embrace His will.

Nonetheless, they have not given up fighting the disease. They are seeking a miracle ceaselessly. Currently, there is no cure or treatment for ALS, and much more research is needed. That’s why they recently created AMPELA Association, which has opened up a line of investigation not addressed until now: treatment with precision medicine (focused on the patient). In order to be able to afford it, they have launched a crowdfunding campaign, which they say has met with a very positive response already.


COMMUNITY

Read more:
The village in Florida that raised a fatherless family

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FamilyInspiring storiesVirtue
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