"Losing a child is completely unnatural": this is how Aspanoa supports Aragonese families

For 37 years, Aspanoa has offered psychological, social and economic support to families of children with cancer from the first day of diagnosis.

When a family from Aragon receives the news that their son has cancerThe process is always the same. In a matter of hours, They must leave their place and move to Zaragoza. The Miguel Servet University Children's Hospital It is the only center of reference for the entire communityAnd from the first symptom detected by any pediatrician in Aragon, families will follow the same path: the city, the pediatric oncology warda father or mother who will have to stay there, day and night, for as long as it takes.

That's where, at that exact moment, comes in. Association of Parents of Children with Cancer of Aragon. Juan Carlos Acín, manager of the association for 15 yearsHe sums it up with a phrase he repeats several times during the conversation: «that other people's children are the same or better off than our own."That idea," he says, "explains everything the organization has done since..." was born in 1988.

A team that waits for families, not the other way around

The first thing Aspanoa offers is something as simple as being there before anyone even asks.We have the advantage of being able to have professionals on the pediatric oncology ward. and that it is not the families who have to request the attention of our services, but rather that they are Our services are already waiting for families"Acín explains."

As soon as the medical team confirms a diagnosis, a social worker and a psychologist They are presented directly. All in a free, with no cost for the services and no need to become a member.

From there, a range of resources is deployed to cover what Acín calls «everything that involves attention"of this type. They include meals" Free room for the companion, a temporary accommodation apartment near the hospital, television and games room run by volunteers, and an accompaniment service which allows parents to "step out for a moment to shower or run an errand" without leaving the child alone.

The 83% survival rate and the unseen aftereffects

Acín provides a statistic that summarizes the progress of the last few decades: when Aspanoa was created, the The childhood cancer survival rate in Aragon was 51%.. Today it is 83%.

"There are life expectancies that are very well supported by the research, by medical management"For everything," he states. But he immediately qualifies: "It's true that we're talking about an environment where 17% do not survive the disease, and it is a very painful moment, because losing a child is completely unnatural."

The illness, however, does not end with discharge. "There are international studies that say that 70% of patients who have had cancer may develop some type of after-effect during their lifetime"He points out. 

Whether physical, cognitive, or emotional, they often manifest themselves years later. when the child is already an adultThat's why, Acín says, the right to be forgotten in cancer cases was achieved in Spain, so that Having overcome childhood cancer should not be an impediment for a person to obtain, for example, life insurance or a driver's license..

In-house research for a "low-profit" disease

For the past seven years, Aspanoa has also invested in Pediatric research in Aragon...a sector that, as the manager points out, is neglected by market logic.Pediatric cancer, as a percentage of the total number of cancer cases, does not reach 2%. This implies that, From a business perspective, research is not profitable. "About this," he explains. 

The association has already invested more than one million euros in projects in the Aragon Health Research Institute, and maintains an annual call for applications 100.000 euros for the winning project, chosen anonymously by the State Investigation Office in Madrid.

One of those projects, funded with a grant of less than €10.000, progressed so far that it is now in the patent process. It is a ovarian tissue preservation technique in girls who have not yet begun ovulation, which is intended to preserve their future fertility.We are very proud to have supported something with such a result"Acín says."

Two projects for the coming years

Aspanoa is now working on two fronts. The first is the funding for wireless monitoring for the pediatric ICUwhich will allow children to move more freely and receive a hug from their parents without so many wires in between. 

The second, funded by an anonymous inheritance, is the first day center in Spain designed for families in outpatient treatment, located next to the hospitalwhere they can spend hours of waiting between tests and consultations in a more comfortable environment than a conventional waiting room.

Acín acknowledges that Aspanoa has a small teambarely ten or eleven people hired, and that a large part of its strength lies in volunteering67 different programs, ranging from those who play with children in the hospital to those who manage the house in Almudévar where the summer camps are held.Volunteering offers the most valuable thing a person can give, which is their time.", it states.

With 37 years of history behind them, ASPANOA believes that the challenge remains the same as always, although with some nuances: «The trend is not to eliminate cancer, but to live with cancer.«.

He adds a final thought, almost as a finishing touch to the conversation: «We continue working on two aspects: providing support to the families that will continue to emerge, and fostering the generational renewal that the association needs to continue growing."However, remember, "There is still much to be done."

Source: Aspanoa