We cannot let these children wither away without a fight

Duchenne Muscular Dystrophy is an irreversible muscle wasting process in boys which severely curtails their lifespan and leaves them wheelchair bound by the age of around 10 years and dependent on family to carry out their daily activities.

The quality of life for these kids and their parents is extremely challenging. Most don’t see 2nd decade of life at present a non-curable genetic disorder we at Parent Project Muscular Dystrophy (PPMD) a non-profit organisation registered in Mumbai - India need YOUR SUPPORT!

About Duchenne Muscular Dystrophy

• Duchenne muscular dystrophy (DMD) is an X-linked recessive form of muscular dystrophy, which results in muscle degeneration, difficulty in walking, breathing, and premature death. The incidence of DMD boy in the society is around 1 in 3,000 live male births. The disorder is caused by a mutation in the Dystrophin gene, located in humans on the X chromosome (Xp21). Since males have only one X chromosome, they are more likely to manifest the disease as the gene responsible for Duchenne Muscular dystrophy is located on the X chromosome.
• When a male child is born he appears very normal, but by around 3rd year of life symptoms of DMD (Duchenne Muscular Dystrophy) are seen mildly like enlargement of calves, difficulty in walking, climbing stairs, weak hand grip, running and jumping just remain dreams for these kids and their parents have no option but to helplessly watch their child suffer from these disabilities. They are unable to perform fine motor skills like their peers. By the age of 7 years most kids have frequent falls due to muscle being continuously wasting away without any replacement with the healthy muscles.
• Effects of Muscle loss is first seen in the calves, thighs and pelvic muscles which lead these kids to wheel Chair by the age of 9 to 12 years.
• Because of inherent genetic defect and mutation in the gene responsible for producing Dystrophin protein which is the key to maintenance of the muscle tissues and muscle cells is absent; it leads to progressive muscle wastage and weakness of all voluntary and non-voluntary muscles like heart and respiratory muscles in the body.
• Since there is no effective treatment accept Steroids and Physiotherapy, this disease is declared as orphan by various FDAs of different countries including USA. Since muscle mass is progressively wasted in these kids, it’s replaced by fat and connective tissues in absence of new good quality muscle mass leading to fibrosis. Steroids due their anti-inflammatory properties can for some time help DMD kids but prolong use of steroids can have serious, deleterious side effects like cataracts, osteoporosis, and weight gain.
• Though these DMD boys appear healthy at the time of birth like any other boys, their life is ever challenging with deteriorating muscles. They face challenges to perform routine life tasks which appear very simple for other healthy people, leading to frustrations in some kids.
• Playing outdoor or any indoor games which require physical activity is daunting task for these kids. Muscle wastage begins from the leg muscles and slowly continuing upwards affecting all muscles of the body including wrist, respiratory and heart muscles. In extreme cases even intestinal muscles which help removal of stool and muscles which help in swallowing of food are also affected.
• Some boys require almost 24 hrs. Breathing assistance in form of ventilators.
• Since muscles which support the spinal cord are also wasted, it leads to spinal cord deformities like lordosis and scolesis (i.e. bending of the spine). All joints cannot function and get stiff and bent.