Story Of Bharath

Bharath is a 14-year-old boy from Vishamangalam village of Thirupathur District. He was born in 2009 and his parents are agricultural labourers hailing from a poor socio-economic background. At the age of 9 months, he developed swelling over his neck and was taken to the Indira Gandhi Children’s Hospital, Bangalore, and then to Madras Medical College Hospital, and Apollo Hospital, Chennai for seeking treatment for a cure. Finally, in 2014, he was taken to Christian Medical College, Vellore where he was diagnosed to have FOP and received counselling a er consultation in the paediatric orthopaedics department.
After there was a misunderstanding between his parents due to financial and other reasons, his father left the family and did not extend support to even Bharath’s medical expenses. Then his mother moved to her parents’ house in the same village and she stopped going for follow-ups to any hospital due to their financial constraints.

As there no resources in Bharat’s grand mother’s house to manage livelihood, Bharath’s mother found a laborour work in thirupur tailoring company. Tirupur is 230km from her village, taking five and a half hours of travel one way. She continues to work there and comes home once a month. Her elderly mother takes care of both Bharath and his younger brother, who is studying in 8th grade at a nearby school.
But when Bharath falls sick, she has to come all the way from her workplace to take care of the child. She is paid 300 rupees per day. So, she has to manage the whole family with her meager income. She is unable to provide any mobility aids and home comfort aids such as a wheelchair, cot, mattress, etc., to make his life more comfortable.
Bharath le in the open shed next to his uncle’s (mother’s side) house at night. As there are no ramps or slopes in the house, someone has to carry him all the time. They are not allowed to make any modifications to that house. But in the outside shed, they can make some modifications.

Activities o f daily living (ADL):

• Eating-Partially Independent (Food is placed in hand)
• Toileting – Fully Dependent (Standing and passing with the help of grandmother)
• Bathing – Fully Dependent (With the help of grandmother)
• Dressing – Fully Dependent (With the help of grandmother
• Transferring (getting up, sitting down in the chair, lying down and getting up from the floor)-Fuly Dependent(With the help of grandmother)

Recommendations based on observationand discussion:

• Teach lung exercises with Spiro meter, as he is often suffering with breathing difficulties.
• Provide Recliner to Bharath to sit and lie down comfortably and wheelchair with bean bag as his hip has deformity.
• Arrange a donor to get a sewing machine to Bharath’s mother to start tailoring work in her village to generate income for livelihood and stay with family
• Home modification (Outside Shed) with ramp/slopes and toilet facility