It seems like no one wants to celebrate my birthday with me

The story of Anjali Kumari and her brother Keshav Kumar is both heartbreaking and challenging. They suffer from a rare combination of Progeria, a genetic disorder causing rapid aging, and Cutis Laxa, a condition characterized by loose, wrinkled skin. Their conditions give them the appearance of elderly adults despite their young ages—Anjali is 7, and Keshav is only 18 months old.

Progeria, also known as Hutchinson-Gilford Progeria Syndrome, is extremely rare and typically manifests in early childhood. It is caused by a mutation in the LMNA gene, leading to symptoms like growth delay, loss of body fat, hair loss, aged-looking skin, and stiffness of joints. Children with Progeria usually have a shortened lifespan, with an average life expectancy of around 14 years.

Cutis Laxa, on the other hand, affects the connective tissue and results in inelastic and saggy skin, which can lead to other complications, including respiratory and cardiovascular issues. This condition is also rare and can be inherited in several genetic patterns, including autosomal dominant, autosomal recessive, or X-linked.

The combination of these two conditions in Anjali and Keshav makes their situation particularly unique and severe. Their father, Shatrughan Rajak, earns a modest income as a laundry man, and the family resides in Ranchi, Jharkhand, India. Despite their financial limitations, the family is determined to seek a cure or at least some relief for their children, hoping to find help from medical facilities abroad.

The social challenges the children face are equally distressing. Anjali, in particular, endures bullying and name-calling at school, which further adds to the family’s heartbreak. Terms like ‘daadi Amma’ (grandmother), ‘budhiya’ (old lady), ‘bandariya’ (monkey), and ‘hanuman’ (a Hindu monkey lord) are used derogatorily against her, highlighting the insensitivity and lack of awareness about rare medical conditions in their community.

The family’s hope rests on finding specialized medical treatment overseas, as local doctors have informed them that there are no available treatments in India. This situation underscores the broader issue of access to specialized medical care and the need for increased awareness and support for families dealing with rare genetic disorders.

Efforts to assist the family could include fundraising for medical expenses, connecting them with international medical organizations or specialists, and raising awareness about their condition to foster a more supportive community environment.

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