$10 will provide a breathing exercise tool to a muscular dystrophy child
$20 will provide for a cardiac test to a terminally ill child
$30 will provide a Back & Lumbar support belt to a child
$50 will provide physiotherapy to a child for one month
$170 will provide a physiotherapy tool kit to a child
$200 will provide nutritious meals to 120 muscular dystrophy children a month
$1000 will provide for Heat & Cold therapy equipment to rehabilitate 100 children a year
$1500 will provide for an automatic Tilt Table to rehabilitate 100 children a year
APPEAL: Given the estimate of more than a million patients in India, we have a challenging task ahead. As you might be aware that muscular dystrophy is a virgin field and obviously the needs and scope for interventions are enormously high. Resources remain to be a major constraint. It is in this background that we look for a variety of support including financial resources from great philanthropists like you. We have presented below a few options for you to choose from and that might suit your generosity to .
Donations for projects: We urgently require your support in establishing a Rehabilitation Cum Resource Centre for people affected by muscular dystrophy/ genetic disorders who otherwise cannot be cared.
Purpose of the Project: The rejuvenation home intends to primarily serve as a ‘home for people who were rendered family less’ because of muscular dystrophy and other genetic disorders and thereby to qualitatively improve their life & longevity. Women & Children, who were orphaned, abandoned and/or at the verge of being abandoned will have this as their home until such a time they are re-integrated into their families or they gain the ability to cope with the condition and lead an independent life with dignity.
While serving a specific purpose, the project intends to also serve the larger interests of the muscular dystrophy communities at large in India. Given the fact that genetic disorders & muscular dystrophy are almost a ‘virgin field’ in India, the organization intends to positively exploit the ‘rejuvenation home’ by improvising it to serve as a, ‘Resource Centre for Muscular Dystrophy & other genetic disorders’ in India. This would necessarily mean a one-stop service for all those connected to muscular dystrophy/genetic disorders.
Problem that project intends to address: A wide range of social (Stigma, discrimination, exclusion, etc), economical (poverty, child labour, etc) cultural (abandoned families, multiple patients under same roof, etc) and emotional (depression, suicide & mercy killing, etc) issues along with the incurable nature of MD make the families jinxed and collapsed. The fact that women are the careers of Muscular Dystrophy, many fathers and their families particularly in the rural setting, begin to rage a war against the mother through various inhuman means. Forceful separations from the family, psychological & physical abuse by the spouse & in-laws, have been the most common forms of victimization. There have been numerous instances where the father disowns his family resulting in the mother taking the burden of protecting her children including the disabled and risky child. There are also instances of appealing for mercy killing and/or self-destruction by the parents/patients.
Desired Impact: It is to be recollected that muscular dystrophy children in India die at least a decade in advance to their counterparts in developed countries. It is this gap of more than 10 years that the project would significantly reduce by proper care, management and protection. Although, muscular dystrophy is incurable at this stage, there have been numerous clinical trials worldwide that promise a cure in a couple of years. This would necessarily mean that a child can be cured at once if only it is protected from the untimely death.
- In this understanding, the project would save at least 100 lives directly every year of its operations. It could save many more lives indirectly by providing the most appropriate medical advice and tools for care & management.
- Independent life with dignity: The education provided in cases of children and the vocational training in cases of adults along with a variety of morale building and rehabilitation services would instill greater confidence in an individual and help them cope with the challenges. The project’s success lies in transforming an individual who was once admitted to the ‘home’ in a fragile condition into an independent man who has the skills, self-worth and confidence to live his/her life with dignity.
Major activities: Information service, help desk, Care & Management, Psycho-social & genetic counseling, physiotherapy, hydrotherapy, Yoga therapy, art therapy, short stay facility, educational support, training & capacity building, clinical trial coordination, Centre for international researchers/volunteers etc.