TORX Trail Running Races 8-17 September 2023

TOR330 Tor des Geants® - TOR450 Tor des Glaciers - TOR130 Tot Dret - TOR30 Passage au Malatrà




TORX 2023 Registration will open in:

TORX 2023 registration is open

  • days
  • Hours
  • Minutes
  • Seconds

Hold my hand, hold it tight in this tough living

LND Famiglie Italiane are families in which one or more Lesch-Nyhan patients live. They are parents, brothers or sisters who live daily with the battle that their relatives endure from birth, with a ferocious rare genetic disease that forces them to use the wheelchair as well as exposing them to kidney problems, sometimes even serious and a series of complications of health.
But the specific feature that makes life so difficult for both the sick and those around them is the neurobehavioral problem which consists in the impossibility of controlling gestures, words and actions with one's will that can sometimes cause even very serious damage to oneself. themselves, to those around them, to objects and interpersonal communication.
"Hold my hand" is a request that comes from these children or young people to be protected and content, "Hold it tight in the tough living" is the request for comfort to be able to live with this extreme condition.
In this last year of isolation caused by the COVID emergency, families have experienced a continuous state of alert and concern. To protect their sick family members, they have given up on social exchanges and have seen the reduction or cessation of personal assistance services for long periods.
For years, the LND Famiglie Italiane association has financed and implemented research and intervention projects to support families and patients of all ages in this "difficult life" by providing professional advice and psychological support to family members, teachers, rehabilitators, educators and staff. of care facilities.
The pandemic has inevitably increased the need and demand for help and new initiatives are needed to accompany families and break their dangerous isolation.
What we have experienced is an unscheduled, but extremely difficult stage and we look at the organization of the TOR - which is aware of the fatigue that extreme sport entails, which proposes and provides "LIFE BASES" to resist and move forward, - as an example also for the fatigue of our families.
By holding hands we will be able to overcome this emergency as well and draw opportunities from it for the future.
The tools that we will put in place are: increase in listening time and remote psychological support, strengthening of home visits, of integrated parent / teacher groups, parents, teachers and rehabilitators on the platform and collaboration with other associations for leisure time initiatives, animation and playful and educational workshops.

Updated: Fri, 08/08/2014 - 18:48