Family builds support network to guide parents of children with heart disease

( “A story is important and it is valuable when it is shared and told.”

This is how they describe Carlos Rojas and Dixiana Rodríguez his effort to support, guide and accompany the families of children who suffer from heart disease and need a prompt operation that is not carried out in national territory.

They talk about history, because what they want is to convey their experience in the midst of the uncertainty they faced after their son, Luis Fernando, I had to face that scenario.

“That was an idea that a friend of mine gave me there in Barcelona (where the young man was operated on) to create a space in which we would open a channel with other families who had similar conditions and be supportive, help them, listen to them,” Rojas said. in an interview with this medium.

Luis Fernando, only 18 years old, He was diagnosed 6 years ago with a genetic disease in his heart that put him at risk of sudden death, so his family was looking at all costs to raise the funds to be able to pay for an open heart operation and thus save his life.

In December of last year, the boy received his Christmas present: the operation he needed. This was possible thanks to the solidarity of hundreds of Costa Ricans who joined the campaign led by his family to receive funds.

“Sometimes in this, and most of the time it is, it’s very bad news. 30 doors were closed to you (for the operation and to receive funds). So the idea is that people see, based on our experience, that it is possible, that it is necessary to move, but it is possible.

It is a very hard moment. It transforms you, there is a before and there is an after of that situation. But it helps you prioritize things that didn’t seem so important before, and to get closer to God. It taught us to be a more sensitive and empathetic family, for those who are facing something similar, ”he said.

In this way, and with that vision and mission, was born “Hand on heart” the campaign led by this family that, once the goal of operating Luis Fernando was reached, was redirected into being an emotional support for so many other families that are currently facing a similar case.

“We are a testimony of many miraculous stories that happened during our search for Luis Fernando, which corroborate that God never leaves us, that faith sees the invisible, believes the incredible, and receives the impossible.”he added.

So far this year, this family, a neighbor of Santa Ana, San José, has already been able to reunite several families, talk, listen, testify and advise others who live the uncertainty of running against time to save their little ones, or adolescents.

“They have told us that they feel accompanied and that this closeness is valuable. They also tell us that once they pass their process, they want to participate to create a network to support each other.

One feels that it is a management that has helped other families in some way, at least to support them, only that someone is supporting you is very valuable in the midst of this situation, “said Rojas.

Only in our country, each year around 400 minors with heart problems. If your family is one of those facing a similar scenario and you want to get in touch with this family, you can do so through their website. with the hand in the heart. blog.

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Deborah Acker

I write epic fantasy; self-published via KDP. Devoted dog mom to my 10 yr old GSD, Shadow! DM not a priority; slow response at best #amwriting #author.

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