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    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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29.01.2016

Well deserved vacations for Chilean EB Families

We visited our patients and their families in their vacations in Laguna (a beach in the central area of Chile) and learned the significant contribution that this experience has on their quality of life.

Thanks to a great initiative from two of our volunteers, Nicole and Denise Fontaine, our Chilean EB patients and their relatives have been participating in a summer holiday program that has been a great success. It has allowed families to disconnect from the stress of the routine and relax, starting the year with renewed energy.

These vacations are organized so that parents or caregivers don’t have to worry about daily chores, or activities to be performed, so that they can enjoy their free time. Also, patients interact with peers of similar ages, sharing interests and different activities, encouraging further development of their autonomy. Relatedly, they receive a daily allowance to be administered in the different rides, which along with greater freedom of choice in terms of the different activities to do, helps them develop greater independence. All participants benefit from being able to try different roles from those that often frame their caregiver and patient interaction, which not only enriches their relationships, but also their personal welfare. Parents, for example, learn to use their free time, which is usually busy with all the care they devote to their children, and also, they learn to give them more independence. Patients, meanwhile, learn to decide for themselves and to interact more freely with their peers.

This summer holiday program has been a significant contribution to our task of improving the quality of life of our patients and their families, by providing them with a scenario that is not just about the disease and the attendance of our patients, but a space to have fun.

We hope our experience will be inspiring and useful to other countries, and that we continue to grow as DEBRA International.

Florencia Pérez, Psychologist, DEBRA Chile
Loreto Moore, Executive Director, DEBRA Chile

Group of people (some are disabled) at the beach

Young woman with EB, wearing a lifejacket, on deck of a boat, a large ship in the background

Group of people (some disabled) on a green hill, looking down on a bay

Boy with EB (with sore feet) on the beach, playing with sand