Children's Day (Bal Divas) is celebrated on 14 November each year to mark the birthday of Jawaharlal Nehru the first Prime Minister of India who loved the company of children. This day intends to increase awareness about children’s’ right to education, health and care. This year, for the first time in India, children’s day was celebrated in the spirit of inclusion for all children. The Organization for Rare Diseases India (ORDI, Bangalore) in association with the Dystrophy Annihilation Trust (DART) and Tamahar Trust for children with special needs celebrated “Rare Children’s Day 2015” with fun, games and lots of action.
Rare Children’s Day is an inclusive concept meant to include and celebrate differences. Children with rare diseases and disabilities are often excluded from a number of life activities and often miss out on fun and games. Most schools celebrate children’s day with fun activities for children. But what about children with special needs or those who home-school or go to special schools? There is no reason to exclude these rare children from celebrating children’s day. This is exactly what ORDI, DART and Tamahar decided to do in holding the first Rare Children’s Day 2015 in Bangalore.
Issues of Patients with Rare Diseases in India: Interview with Prasanna Kumar Shirol, Founder Member of ORDI
Prasanna Kumar Shirol, a founder member of ORDI, in an exclusive interview with Medindia, talks about the issues facing patients with rare diseases in India.
Prasanna Kumar Shirol, a founder member of ORDI, in an exclusive interview with Medindia, talks about the issues facing patients with rare diseases in India.
‘Rare Children’s Day 2015 was celebrated by the Organization for Rare Diseases India (ORDI, Bangalore) in association with Dystrophy Annihilation Trust (DART) and Tamahar Trust for children with special needs and rare diseases.’
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This fun, celebratory event was
held on 14th November, Saturday at Canara Union. Organized by
Prasanna Shirol (ORDI), Ravdeep Singh Anand (DART) and Vaishali Pai (Tamahar),
this unique platform brought diverse groups of children together for half-a-day
of fun, games and entertainment. Children with rare disorders like Pompe and other lysosomal storage disorders like
Gaucher, Duchenne Muscular Dystrophy (DMD), children with developmental
delays, autism and other rare
disorders took centre stage as they showcased their talents and strengths. The clear message was every child is special and unique endowed with talent and ability to go forward in life. The event was entertaining and awe-inspiring as Sarthak, a young man with DMD who is currently pursuing III year MBBS filled the audience with positivity, cheer and inspiration as he shared his story and bigger goals for life. It was clear that nothing is impossible to achieve if one has intentions and puts in efforts. A touch of art and craft filled the room as Jose from Tamahar shared fun art ideas with banana leaves. Eco-friendly watches and crowns and even goggles were fashioned perfectly using slender, green banana leaves. Children experimented with different styles folding the banana leaves in unique ways.
The highlight of the day added excitement among the audience as DARTian Karandeep and band performed a musical piece completed with guitar and instruments. Music, joy and palpable cheer filled the room as some children joined in a light jig and dance moves. The audience was enthralled by the band and their performance as their moods soared with happiness. The event concluded with a lunch as everybody went home light-hearted and happy to have been a part of an inclusive event that celebrated human diversity. Rare Children’s Day has a clear message that every human has a right to enjoy life and join in its celebrations.
India Needs a Healthy Policy for Rare and Genetic Disorders
Karnataka High Court directed the state-run Indira Gandhi Institute of Child Health (IGICH), to provide free treatment to patients suffering from (LSDs).
Karnataka High Court directed the state-run Indira Gandhi Institute of Child Health (IGICH), to provide free treatment to patients suffering from (LSDs).
References:
1. http://ordindia.org/2. http://tamahar.org/#
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Pompe disease or Glycogen Storage Disease is a rare genetic disease caused by the buildup of a sugar called glycogen in the body’s cells. It is caused by the deficiency or absence of the enzyme alpha-glucosidase.
Pompe disease or Glycogen Storage Disease is a rare genetic disease caused by the buildup of a sugar called glycogen in the body’s cells. It is caused by the deficiency or absence of the enzyme alpha-glucosidase.
