Description
- The voluntaries
The project consists in arranging a meeting in a family village that accommodates 250 persons approximately including sick persons, parents, and representatives of the medical and paramedical staff.
During three to four days, participating members have the opportunity to discuss their problems and the solutions found. Conference forums, workshops and demonstration of material are proposed. This formula gives an opportunity to provide a technical and emotional support being one of the chore aims of the Society. For many years the week-end has taken place in Nouan Le Fuzelier, near Orleans. VML have been able to invite more and more families (around 65), members of the Society as well as about forty volunteers (Doctors, Physiotherapists, Nurses, and Leaders). The families and volunteers have provided care for both sick and non sick children, giving parents the opportunity to meet and attend the information workshops.
Aim of the project
Every day parents are confronted with multiple problems due to the many evolving symptoms of their child’s illness. Parents are constantly looking for solutions to each problem as it arises.
As soon as a solution is found (when it is found), parents have to look for another solution related to each new complication. It is an endless seeking, sometimes with no result, in order to give the child some relief to an extremely wide range of pains (Orthopaedic, Digestive, Cardiac, and Psychological). Doctors do not always have an answer because of the lack of knowledge and experience
Because the Society aim is to overcome the Lysosomal diseases and their consequences, we have a Duty to contribute effectively to the search of this Better Well Being.
VML has made the following double finding:
Solutions exist but they are unknown and doctors may not be aware of them.
Starting from this fact, the Society has found that it would be helpful and original to offer parents the possibility to share their experiences and discuss them in a non conventional work frame (away from Hospitals)
There is evidence that this type of experience greatly helps to improve global knowledge and broadcast.
The child is the person who benefits directly from this experience with no delay.
- Thomas, sick, and Claire
