An impressing story of (perhaps) the FIRST DMD child in India to enter a regular college-Master.J.Pandiyarajan, Madurai
Personality: Master.J.Pandiayaran is a well-mannered and matured child. He doesn’t speak much but a great listener. He has a unique ability to grasp things quickly and very sensitive to his immediate environment. He is full of dreams and a believer. He is very respectful and obedient. Although, he was afraid about the change of school in 11thstandard, he was able to earn a very good name and lots of friends in the school. We have not seen him once feeling bad about his medical condition.
Family profile: J.Panidyarajan was born on 27.05.1997 and is a clear case of DMD as confirmed by the genetic test. His younger brother J.Balakumar was born on 21.10.1998 is a DMD patient too. Initial symptoms of waddle walking, frequent falling down, weakness in limbs etc., were noticed around 5 years of age. Although, they hail from an upper middle class family, they did not do much of rehabilitation at the early stages because of lack of adequate information & guidance. This has resulted in the onset of disability early during his 8 years of age.
Initial contact: The family has come into our contact on 07.06.2010 within 2 month of the beginning of our operations. Both the children were able to stand only for a minute or so but could not walk when they came into our contact. Also, they weren’t aware of even the type of muscular dystrophy because there was no diagnostic test done except the clinical examination. The initial two months of their induction was really tough because of the non-acceptance of the father who is an Engineer turned to be a farmer. The mother was in a pathetic condition, because of her ill health already. The family situation has compelled the mother to shoulder the entire responsibility of assisting both the children in their daily chores, dropping and picking up both children to/from their school. This has led to the speedy deterioration of her health too. She has been diagnosed last year to have developed disc prolapse and cardiac problems which is a common phenomenon amongst almost all the mothers of muscular dystrophy children in India.
Rehabilitation: Therefore, counseling has become one of the core interventions of the organization. Regular counseling to the parents, particularly the father has helped us win their cooperation in designing a rehabilitation program with emphasis on physiotherapy and breathing exercise. The arrangement was such that the mother picks up both the children from school in the evening and spends an hour on physiotherapy at our office for 5 days a week regularly for almost a year. Significant improvements were witnessed in their mental & physical health, muscle strength, external relations etc. We have also provided opportunities for the children to learn using computer by providing access to computer education at our office. After a year, we have arranged a physiotherapist on a nominal fee to visit the children at their home and perform physiotherapy. This has helped the children stay in good health. In the meantime, we have also arranged for the ‘DNA test’ at a subsidized price.
Education: The private matriculation school where both the children studied had started giving troubles deliberately to facilitate their exit because of the risky nature of muscular dystrophy and special arrangements required. Although, we have managed to convince the school in allowing the children continue their education, we could not sustain this arrangement for more than a year. When Master. J. Pandiyarajan reached the 11thstandard; the school has refused to retain his class room in the ground floor but moved it to the 3rd floor. One can imagine how difficult it would be for a mother to physically carry an 11th standard boy over 3 floors to put him in the class room and back. The school has also started giving lots of many other silly troubles. At a point the parents became helpless excepting to take the child out of school. Without even a day’s break, MDF INDIA has secured admission to the boy in another school (JEEVANA) which is one of the best schools in Madurai where the demised son of the founder had studied. Also, MDF INDIA has helped the parents buy two advanced model of wheel chairs (fold & portable with 6 wheels) directly from the manufacturer (VISSCO, Mumbai) at a much discounted price; one for the home use and the other for him while at class. On our request, the school has arranged a team of senior students to assist the boy in attending the Morning Prayer, visiting the library and all other school activities so as to ensure that the child don’t miss any of the joyful moments of schooling.
It were the good will and personal influence of the founder of MDF INDIA that helped secure the admission even at the end of the 2nd term of the academic year. The school and all its teachers were educated of muscular dystrophy already solely because of the demised son of the founder who studied there right from pre-KG to 12th standard. Another muscular dystrophy child has been studying in the school also on the recommendations of MDF INDIA. Essence of this part of the story has been ‘the peace of mind’ to the parents and wonderful learning atmosphere to the child, as ensured by MDF INDIA. The boy has secured 1029 marks out of 1200 in his +2 examinations. The struggle of putting him into a college started again, by the father forcing him to opt for distance education as against the wish of the child to go to a regular college. We have had several counseling sessions with the father and convinced him to send him to regular college. As we speak now, the boy is writing his 2nd semester examinations (Bachelor of Commerce) already.
Impact: The child has been doing well not only in his education, but also gained confidence and courage to face the reality. He strongly believes that there is a future for him too. Master. J.Pandiyarajan has been now in regular communication over phone & email directly with the Executive Director of MDF INDIA. We wish and pray that the dream of Master. J. Pandiyarajan to become a Charted Accountant comes true.
Appeal: Master. J. Pandiyarajan’s story is only a sample of our interventions. Several other children are being supported by us in different forms and varying degrees. Establishing a full-fledged rehabilitation center would help us realize the dreams of hundreds of children like J.Pandiyarajan.