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CAH is a group of genetic disorders that present at birth and impact the adrenal glands, disrupting the release of vital hormones like Cortisol, Aldosterone, and Androgen. Moreover,

Salt-wasting Congenital Adrenal Hyperplasia (SWCAH), the kind that both kids have, is the most severe form of CAH. SWCAH makes it difficult for the body to regulate sodium levels in your

blood. "The kids are mainly of steroids which leads to even more issues like fungal infections, constipation, and vomiting," Anthony tells FIT. According to Anthony, the kids'

medical expenses go up to Rs 50,000 per month. "We have no one else at home to take care of them," she says. What else have they tried so far? Anthony says that CAH was included

in the Central Government's list of rare diseases only recently in January 2023, after the family gave a requisition and pushed for it. Under the National Policy for Rare Diseases 2021

Scheme, people with the listed rare diseases are entitled to up to 50 lakhs in financial aid and treatment at a designated Centre of Excellence (CoE). Smitha says, "Kerala doesn't

have a CoE of this rare disease. The nearest one is in Bengaluru." She adds that the nearest hospital where they can get treatment is in Thrissur, which is nearly 132 km away from

Kottayam. "Because of one son’s severe autism, we can't take him by train or flight. We have to take him by road, which is a difficult task, not to mention expensive," she

says. She claims that they approached the high court with the kids' medical records and all the necessary documents but to no avail. * Hunt for a viable job She alleged that they had

approached their panchayat for a job near where they lived so that they could stay close to their kids during working hours. Despite the panchayat members agreeing to do so, she alleges that

the request has been stuck as the necessary paperwork has not been sent to the state government yet. "We sold the land we had and all my jewellery. That’s how we have been managing so

far," Anthony tells FIT, adding, "We have taken a loan too, with no means to repay it."