Families with someone affected by a rare disease constantly need to find the necessary means to maintain the well-being of the child and their family. The needs are very specific, difficult to obtain, and costly: health, education, home adaptations, acquiring orthopaedic materials, etc. They need guidance, companionship, and support in areas or times when public resources do not cover all their needs.
The project
The Lola Busca Nueva Imagen project aims to ensure a healthy life and promote the well-being of kids with rare diseases and their families, mitigating risk factors with effective support.
To this end, the Association aims to reach the following, specific goals: providing families with the necessary orthopaedic material; training families in the appropriate manoeuvres to facilitate the breathing of children; improving the psychological situation of families by promoting their mental and emotional health and autonomy; encouraging work-life balance for family members and the assistants who live with children affected by rare diseases on a daily basis, and helping families who do not speak Spanish to communicate with the health and social services staff.
The beneficiaries
The direct beneficiaries will be the children and their families. The project aims to reach a group of 8-10 children who need one or more of the resources offered by the programme.
The beneficiaries are affected by various diseases, like Cockayne syndrome or STXBP1 (Syntaxin Binding Protein 1) syndrome. The family situations vary a lot but are united by the high costs of the materials, schools, and therapies, combined with the children’s partial or total dependence that requires assistants to stay with them 24 hours a day. This makes it difficult to work, share responsibility for the rest of the family, or take care of oneself.
Project name: Proyecto Elías
Proposing organisation: Lola Busca Nueva Imagen
Area of intervention: Health & Welfare