Duchenne Muscular Dystrophy (DMD) is a degenerative disease that causes muscle weakness in the hips, thighs, shoulders and then later, in the heart and respiratory systems.
This Australia family is battling it three times over.
DMD is more common in boys (one in 3500), but women can still be carriers, and as it turns out two Australian sisters, Maree and Samantha, carry the gene. Tragically, their sons, three grandsons of Sue Tantaro, have been diagnosed with DMD, all before the age of five.
Sue’s daughters will eventually have to become full-time caregivers to their sons, quitting their jobs and taking on a costly and heartbreaking journey. Sues other daughter Logan is being tested for the gene, and if positive, she will opt for IVF, which can lower chances of passing on DMD.
By the time DMD patients are adolescents, they will likely lose their ability to walk, and may eventually become quadriplegics. Respiratory failure is also common in the patient’s 20s and 30s.
Sue’s family wants to raise awareness around the disease and they hope to raise funds for the cost of care for the boys. On March 17th, the family plans a cocktail reception to help them to this end. Help this family out by spreading the word.
