Anjali Kumari and her brother Keshav Kumar suffer from an extremely rare disease; The disease casuses swollen faces, wrinkled skin, pain in joints and make them look like pensioners. Their parents dream of a cure, but doctors say there is no treatment.
Keshav Kumar, 18 months, and his sister Anjali Kumari, 7, were born with a rare genetic disorder called cutis laxa and a form of progeria, that make them age rapidly and look 10 times their age.The children have loose, wrinkled skin, swollen faces, they suffer from pain in their joints, have breathing issues and are prone to various infections.
In most cases, cutis laxa is inherited, but their father Shatrughan Rajak, 40, and mother Rinki Devi, 35, and oldest sister Shilpi, 11, do not suffer from the disease.
Even though local doctors claim there is no cure for the disorder Keshav and Alhaji’s parents hope that one day their children will be able to live a normal life.
Little Anjali said: “I know I’m different from others my age. I have a different kind of face, a different body, different everything. I have a swollen face while the rest of the world looks normal. People always stare at me and pass bad comments.
The children in school call me names like daadi Amma (grandmother), budhiya (old lady), bandariya (monkey), or hanuman (a Hindu monkey lord) and it annoys me. I want to be treated like a normal kid and I want to be accepted for who I am.
Their desparate father Shatrughan said: “We dream there is a cure for my children. People in our community call them ‘old’ and it’s heartbreaking. We’ve tried to get help from our local doctors but they have told us our only hope is from overseas.
I just hope someone can give us some answers. I am helpless. I feel very sad that I do not know what to do to help my children. I see them ageing faster than me and there is nothing I can do about it. It breaks my heart. I am praying for a miracle.”
Anjali already experiences ailments usually suffered by pensioners.
The siblings more or less stable now but if the disease progresses it can also affect the internal organs. Their lungs, heart, intestines, or arteries may be affected with a variety of severe impairments; they could face heart attack, chest infections, arthritis and so on.
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