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In this new informative capsule, Esther tells us about the initiatives that she and her family have had to help the Cystic Fibrosis Balearic Association to achieve its objectives.
An up-and-down start
Esther is the mother of Leia, a 5-year-old girl. After a false negative, Leia was not diagnosed with Cystic Fibrosis until she was a year and a half old when she underwent a heel prick test.
Once the diagnosis was known and thanks to the pediatrician, Esther contacted the Association to learn more about Cystic Fibrosis and to be able to offer her daughter the best treatments.
The support of an Association
Esther received counseling and a lot of emotional support during those early visits. Her mood was good, until, as time went by, the idea that CF is a degenerative disease began to weigh on her. At that point, that support helped her to get out of that emotional rut.
Family involvement
Both Esther and her family have done a lot for the Association. They have been involved, in addition to being associate members, in the organization of events as part of the volunteer team, but, above all, with initiatives to raise money for the treatment of the whole group.
Normalization of the disease
This family has been concerned with normalizing the disease at school, with the premise that Leia has a disease, but she is not sick. The disease is latent at many times in Leia’s life and appears at other times, so she and the people around her have to normalize this situation.
Initiatives to collaborate with the Association
The first initiative was to organize a meeting with Leia’s teachers so that they could learn about the disease and resolve any doubts they might have. She also organized a storytelling session to normalize the disease in Leia’s classroom.
Esther wanted the school’s annual AMPA party to be in favor of the Association, but they did not pay much attention to her, so she joined the AMPA Board of Directors and promoted this idea until it became a reality in 2024.
She has secured gifts from many companies to make the raffle a success, so she and her family can serve as an example.
#TogetheragainstCF
