Organiser: María Agustí Foundation.
Collaborating organisation: Ramon Molinas Foundation.
Dates of implementation: 01/06/2014 – 30/06/2015.
My Moves, exercises to improve the quality of life of children with hemiparesis and hemiplegia
The Ramon Molinas Foundation has collaborated with the María Agustí Foundation in order to dub the video My Moves in both Spanish and Catalan, an exercise DVD for children from 0 to 3 years old with hemiparesis and hemiplegia. Created by Hemihelp, a British organisation with more than 25 years of experience, and presented by the prestigious paediatric physiotherapist Kiki von Eisenhart-Goodwin, the video demonstrates exercises specifically designed to use both sides of the body, increase muscular strength, improve posture and amplify range of movement.
The DVD, which is divided into four sections for different age groups, demonstrates exercises that can be performed at home without the need for a large space, and that complement physiotherapy sessions carried out by professionals. A copy of My Moves can be obtained free of charge. The DVD is distributed to all the families that are members of the Child Hemiparesis Association and to all professionals who request it.
Hemiparesis and hemiplegia, two forms of child cerebral palsy that affect 1 in every 1,000 children
Hemiparesis and hemiplegia are two forms of child cerebral palsy. Cerebral palsy in children, according to the Spanish Paediatric Association, is a series of movement and posture development disorders causing limitations in movement, attributed to non-progressive damage on the developing brain during the foetal stage or during the first four years of life.
Hemiparesis is a neurological condition which makes movement difficult in half of the body. In contrast, hemiplegia is when the condition causes total paralysis of one side of the body. Both affect one in every thousand children born and manifests itself in the form of anomalous postures, or deformities in the limbs due to weakness in certain muscles and spasticity in others.
Treatment to alleviate its effects should be specific to each person and each type of injury. The most effective way to tackle these disorders is physiotherapy, which helps to coordinate motor function and develop the necessary muscle tone to encourage the personal autonomy of children with hemiparesis and hemiplegia.
The María Agustí Foundation, a voluntary organisation dedicated to creating a welcoming network of support
María Agustí Foundation, formed at the end of 2013, works towards raising awareness of the existence of child hemiparesis and hemiplegia. The foundation’s key objectives are to improve prevention, treatment and research on these disorders, and to improve the quality of life for children with these neurological conditions by developing a network of support.
A few months after its creation, the organisation launched the Association for Child Hemiparesis with the mission of providing information, training and assistance for people with hemiparesis and hemiplegia. In addition, the association is resolved to creating links with organisations from other countries and gathering support from professionals, public and private organisations alongside anyone affected by or linked to these disorders in order to improve the prevention, research and the care of this group.
Spain, a country without support networks
According to Unicef’s study on the status of disabled children in Spain, there are 138,700 minors between 0-16 years old with a disability in Spain. In spite of these figures, the regulation and practise of early care programmes for children is insufficient, and no adequate support policy exists for the families. It is estimated that only 50% of these young people are cared for at Early Care Centres. For the correct care of these disorders it is important that they are diagnosed promptly so that, with the correct treatment, those affected can improve their quality of life.
In Spain, in contrast with other countries, no information or studies on children with hemiparesis or hemiplegia existed until the founding of the María Agustí Foundation and the Child Hemiparesis Association. Around the world there are a number of associations (Sparkle, Chasa and Can Child) which promote research into the prevention of, and new therapies for, these disorders. They offer support groups and meetings, organise activities to share experiences and information and work to fight towards eliminating the invisibility of these neurological conditions.
Pages of interest: