Renju’s daughter was three-and-a-half years old when she was diagnosed with Type 1 diabetes. Her parents soon after stopped giving the child milk with sugar or anything sweet for that matter. Renju’s daughter quickly became used to the diet from such a young age. Their daughter is now 13-years-old, and several other lifestyle changes have had to been made since she was first diagnosed. To the relief of several parents, like Renju and her husband, the state government has now made it easier for diabetic children to access their medications and needs during exams.

The General Education Department issued a circular on February 28 allowing diabetic children to carry any supportive material or medical apparatus they require, to exam centres. This includes insulin pumps, insulin pens, water, sugar, tablets, chocolates, candy, fruits, snacks and other such food items.

The circular

This is the first time that the state government has issued a circular paying attention to the needs of children with diabetes. While schools following the CBSE syllabus have incorporated such norms after a court order was issued in response to a petition filed by a parent, this is the first time that a circular has been issued for government-run schools.

While the circular permits students to bring their required support materials and snack to the exams, it has also directed that the items be left with the invigilator, who shall hand over the items to the students when asked. Something that most parents view to be risky.

“We can’t accept it at any cost. What the support system provides the children are medicines which can’t be taken off from their body for three hours. Even otherwise children would be anxious while in exam halls, removing the support system would affect their confidence. Sugar fluctuation is normal for children with Type 1 diabetics. What happens if a child collapses from the low blood  sugar before the invigilator is able to give them snacks or glucose? There have been instances where children fainted from low blood sugar and put them in a comatose stage. So this is something we are extremely concerned about,” Shihabudheen, a parent of a diabetic child, tells TNM.

Shihabudheen is also the Vice President of the Type 1 Diabetes Welfare Society, an organisation for parents of children affected with diabetes, which is based in Thiruvananthapuram. His four-year old son manages diabetes with the use of an insulin pump. It was the organisation which highlighted the issue and brought it to the government’s notice. Now, Shihabudheen says that they plan on submitting another petition seeking corrections in the circular.

“No one can ever say when there will be some blood sugar variation would, the support system (insulin pump) should be attached to their body for making it function automatically. Even the students who are good in studies can’t even write exams because of tension, their hands would sweat; the chances to collapse is high among the students. It is foolish to remove the insulin pump from them and even not allowing to keep the snacks with them,” Dareena, mother of a tenth standard student says.

In her daughter’s case, she says, since the teachers and her classmates are aware of her health condition she hadn’t so far faced any difficulty. “But during board exams when the invigilators are from outside, we can’t expect all of them to be aware of the condition and behave sensibly to the students,” she adds.

Shihab feels that many children don’t wish for others to know about their health condition and are hesitant to take insulin injections, prefering to keep an insulin pump attached to their body instead. “Since the circular says to remove the insulin pump and to keep with the invigilator they would rather stop using it. Also it is hard for children to hold urine for three hours, they should be allowed to urinate during exams. There are students who have even affected with urinary tract infection without urinating during exam,” he says.

The stigma

The parents say that the society is not yet to familiarize with juvenile diabetes and thus are either unaware or don’t bother to be friendly with the children.

“In the case of many students even their classmates who sit near them don’t even know for the children prefer to hide for they don’t want to view them as patients. We, the society has been telling them to be more open and to be friends with disease so that they can manage it better,” Shihabudheen says.

Renju says that there is sidelining and discrimination in schools. “The affected children can do anything. But they would be sidelined in schools saying that they won’t be able to do this or do that.”

“The lack of awareness in the society in general would even affect the children’s confidence. The people around us would treat the children in a particular way which would make us, the parents, sad. So only the inner circle, who are closely connected with the children, need to know about their condition. Better that others who would come with random questions like how are you now, without having an iota of idea of what Type 1 diabetes,” she adds.

She believes that primarily the awareness should be given to the parents to deal with all this for their empowerment is required for grooming the children. Her daughter was diagnosed with it when she was three and half years old. “Each child is different and each one needs special treatment and care. Initially like any other parent we were also shocked. But a seminar we attended at CMC Vellore totally changes my perception. Now we see more positives. There is nothing negative in it at all. Sometimes the child feel, the parents are facing all the hardships because of them, we should be able to deal with that too” she says.

While Renju says she and her husband are together in taking care of the daughter there are others who don’t even get the support of their partner.

“My husband or his family is the least bothered about my child’s condition. I take her of my child with the income I earn and am not able to provide my child with modern facilities. Also the mental agony is huge: When I see her medicine each time I open the fridge, whenever she asks me to cut off her head, leg or hand when the pain is unbearable, it is all difficult. When she was diagnosed with it, we like many others thought that diabetes in children is curable. But after realizing it is not, seeing her as a patient is disheartening for me,” one mother says.

‘Mittayi’

The Kerala government launched a scheme ‘Mittayi’ (meaning ‘sweet candy’ in Malayalam) in 2017 November to provide free diabetic treatment children below 18 years of age. Providing insulin pumps, medicines and financial assistance was the objective of the scheme.

The medicine under ‘Mittayi’ is provided through four medical colleges in the state. But even in that case the parents who don’t live in the same place where the medical colleges are located need to travel long to get the medicines. Hence they are demanding that medications be provident in more government-run hospitals. For children who use insulin pumps-even it if the pumps are provided by the government- the average amount of money required for treatment in a month is around Rs 20,000.

"There are 12000 students registered under Mittayi. But the number should be higher only. Even if the government provides pumps, we need to find money. For those who don’t use the pump, the expense would come around Rs 6000 or Rs 7000. There are parents who left their jobs, abroad or here, to take of their children for blood test needs to be done in regular intervals, and insulin injection should be administered. We also would request to increase the age limit from 18 to 25 to get the assistance through Mittayi. But we would call the scheme historic for no other state has implemented it so far," Shihabudheen says.