Down syndrome is a set of physical and mental traits caused by a genetic problem that occurs before birth. Children who have Down syndrome tend to have certain features such as a flat face and a short neck. They also have some degree of intellectual disability. This varies from person to person. But in most cases, it is mild to moderate. Down syndrome is a lifelong condition. But with care and support, children living with the condition can grow to have healthy, happy and productive lives.
I am a Pune-based software engineer and I fought a long legal battle to adopt a child named Binney, becoming India’s first single parent to adopt.
Binney is suffering from Down syndrome. Initially, he developed the very same symptoms as in other cases of Down syndrome, but now his situation is such that many people can’t even believe about his condition. Binney is 2-year-old now and he’s growing and responding like other “normal” kids of his age. His birth parents left him in an orphanage because they thought that there is no hope for the child. But this is a completely wrong perception. In India, people rely only on fast and easy treatment access, which is not possible in case of any genetic abnormality because the recovery process is gradual. So nothing can be done at once but the parents’ sincere and constant efforts can surely lead to a miracle.
There are three types of Down syndrome – trisomy 21 (nondisjunction) (accounts for 95% of cases); mosaicism (accounts for only about 1% of all cases) and translocation (accounts for about 4 % of cases). Regardless of the type, all people with Down syndrome have an extra critical portion of chromosome 21 present in all or some of their cells.
This additional genetic material alters the course of development and leads to the characteristics associated with Down syndrome.
Source: Sadasiv Swain/Flickr
Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with this condition. Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counselling for parents is becoming increasingly important.
In India, various organizations are primarily involved in the treatment of Down syndrome and have witnessed miracles in a few cases. Potential treatments include early intervention; alternative therapies involving a wide range of theories and treatment practices which parents should discuss with their doctors; occupational therapy that facilitates the development of fine motor skills like feeding, dressing and grooming; physical therapy to facilitate the development of gross motor skills like posture and proper foot alignment; and speech and language therapy.
This can help infants and toddlers begin learning to communicate and help children and adolescents progress in speech and language.
Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach the age of 60, and many live even longer. Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop to their full potential and lead fulfilling lives. It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts. They should be given the opportunity and encouragement to develop them.
Some of the organization working in this field in India include:
1. Down Syndrome Federation of India – Run by Dr. Rekha Ramachandran
Email: email@example.com, firstname.lastname@example.org
2. Mindheal Homeopathy Clinic
Phone: 022-252 30530, +91-9930363981
– Aditya Tiwari
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