Home » Merosin deficiency dystrophy, the rare disease of 13-year-old Roman Luca: «Research is the only hope»

Merosin deficiency dystrophy, the rare disease of 13-year-old Roman Luca: «Research is the only hope»

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Merosin deficiency dystrophy, the rare disease of 13-year-old Roman Luca: «Research is the only hope»

Vito Sink, mother of 13-year-old Luca, speaks out on their journey with merosin deficiency dystrophy

Vito Sink, the mother of 13-year-old Luca, a Roman student, has been candid about the challenges her family has faced since Luca was diagnosed with merosin deficiency dystrophy. In an exclusive interview with Il Messaggero, Sink shares the emotional rollercoaster her family has been on and their unwavering hope for a cure.

“It is unthinkable that there is no cure for my son’s illness. But we are not discouraged, we have a lot of faith in the research,” Sink told Il Messaggero.

Merosin deficiency dystrophy is a rare genetic disease that affects the muscles, nerves, and partly the brain. For the Sink family, the diagnosis was the beginning of an overwhelming journey. “We were two quite young parents and we didn’t know in any way what dystrophy was. We had a different reaction, we first had to manage deep pain. However, after locking myself in a room for 4 hours, I understood that I had to react,” Sink recalled.

The family has navigated through the challenges of managing the care process themselves, with the uncertainty of the disease’s progression looming over them. “During our growth – says De Vito – we had to manage the care process ourselves, there was a lack of long-term planning. With this disease, you observe difficulties as the child grows,” Sink shared.

Sink also emphasized the importance of building a support network for families dealing with rare diseases. “All this was possible thanks to a network of assistance and relationships which, if it works, facilitates the seemingly most difficult paths,” she said.

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Despite the hardships, Sink remains hopeful and resilient. “I am grateful to my son, because he taught us that another way of living is possible, not dominated by sadness. Of course, we still need to work hard to change mental barriers and to allow care and a good quality of life for all children, whatever city they are in. But with my testimony, I hope to give courage to other families too,” she expressed.

In the midst of their journey, the family is also actively involved in supporting research efforts. “For our children, research can truly change their lives,” Sink declared.

The Sink family’s story serves as a reminder of the strength and resilience of families facing rare diseases and the critical need for continued research and support.

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