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Family in lockdown for seven months due to their son’s rare disorder

No one outside the family allowed to enter home and child unable to go to school

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30 October 2020 11:21 AM

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ACN | Barcelona

A family from Manlleu, a town in northern Catalonia, has found themselves in confinement for the past seven months due to their son Lluc’s rare disorder. 

Àlex Roca, Lluc’s father, makes calls for more vigilance among the general population, as the pandemic seems to once again get out of control. 

He told the Catalan News Agency (ACN) that “when the pandemic gets out of control, it always affects someone.”

Lluc suffers from myotubular myopathy, a rare inherited disease which affects skeletal movements. Currently, in Catalonia there are only three cases. This means that Lluc is unable to breathe, talk or walk by himself, however he retains full cognitive abilities.

Due to this condition, Lluc is more susceptible to complications from illnesses, and even a simple cold has sent him to the ICU.

Lockdown

“Before the lockdown, we did not go out much, and we have always been careful, but now it has gotten worse.” explained Lluc’s mother, Glòria Humà. 

Relatives have only been able to visit the family outdoors in their garden, with masks. This also means that the parents have had to take leave and work from home, since they are no longer able to receive extra support to take care of Lluc. 

Education continues, but Lluc can no longer go to school. Instead, he receives classes three times a week by a teacher outside the home. 

Trips out have been limited to pharmacy and hospital visits. His father Àlex Roca laments “we had gained a small amount of terrain over the years and we have lost again.”

Call for vigilance

The family has called for people to be more careful. Humà believes that some people are “not conscious” of the risks which accompany Covid-19. 

Lluc’s dad reflected on a hospital visit during the pandemic for a cold Lluc had caught. “What would happen if he suffers any complication and needs a respirator and the hospitals are collapsing? Or if one of us catches it? Who will look after him?”

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  • Teacher gives Lluc classes outside his home October 27, 2020 (Gemma Aleman)

  • Teacher gives Lluc classes outside his home October 27, 2020 (Gemma Aleman)

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