Can't hop or play around: Two Faridabad brothers fight against a rare genetic disorder

03:44 PM Sep 30, 2021 | Ronak Mastakar

Every time Faridabad-born four-year-old Kenit and two-year-and-nine-month-old Medhansh see kids of their age hopping around, they can only sigh. Their condition doesn't allow them to indulge in playtime like other kids. In October 2019, both of them were diagnosed with Mucopolysaccharidosis II (MPS II) or Hunter’s Syndrome, which is a rare genetic disorder and if left untreated can result in death.

In Hunter’s Syndrome, the body is unable to digest (or break down) a type of sugar molecule, which is crucial for the development of bones, skin, tendons and other tissues. Owing to their rare health condition, Kenit and Medhansh have difficulty walking and talking and suffer from joint stiffness, respiratory issues, hearing loss, speech delay and heart problems.


The line of treatment for Kenit is Enzyme Replacement Therapy (ERT), which will be done at AIIMS, Delhi. While for Medhansh, doctors have suggested Bone Marrow Transplant at Narayana Hospital, Banglore. The total cost involved for both the children is a whopping Rs 5 crores. And their parents, Ravi and Neha Jhawar, are running pillar to post to arrange for money to pay for their sons' treatment.


Ravi Jhawar works as a chief manager in Punjab National Bank, Gurugram, while his wife, Neha, gave up her job in July to care for their children. And for the parents, arranging for such a huge sum is becoming difficult. “We approached several government agencies including PMO, President of India, Chief Minister of Haryana and many others for help. We knocked each and every door of government departments. But when we approached the Union Health Minister he said health is a state matter. We also wrote to the state government, which said the treatment is too expensive and that the state government does not have enough budget for this and suggested we approach the Ministry of Health and Family Welfare,” Ravi explains.

“In desperation, we took the matter to the Ministry of Health and Family Welfare. The Ministry said they don't have a policy under which they can take our children's treatments. Dejected, we filed a petition in Delhi High Court seeking direction to the Centre to provide uninterrupted and free treatment, as the therapy is expensive. In April this year, the government launched the National Policy for Rare Diseases, 2021. But later went silent when it came to distributing the funds. The government says it doesn't have data of such patients and they will first collate it. The Ministry of Health and Family Welfare has launched a crowdfunding platform to help patients suffering from rare diseases. But the website doesn't have proper instructions on how to use it. It even said that AIIMS will examine all such cases (Center of Excellence) and within two weeks of getting representation from the patients the committee will take a decision and forward the case to MoHFW for uploading the patient details on the crowdfunding platform. But, despite having conducted all tests, the government has not added Kenit and Medhansh's names in the portal. The case in Delhi High Court is still on and the next hearing is on October 27,” Ravi added.

According to the plea filed in Delhi High Court, the children were examined by doctors at the Sir Ganga Ram Hospital and AIIMS and after the examination and tests, they were diagnosed with MPS II. A second opinion also confirmed that the two children are suffering from the ailment. Both the hospitals informed the father that there is no medicine manufactured in India for their disease and only one company each in the USA and Korea manufacture it and India has approved the US company. But the annual cost of treatment for one patient would be between 1 crore to 1.20 crore and Ravi's income isn't enough for him to bear the cost of the treatments.

“We were continuing our Kenit and Medhansh's treatment in AIIMS, Delhi. And the doctors suggested we start our crowdfunding till the government one isn't regularised. We approached the crowdfunding portal, Impactguru. Currently, we are trying to raise funds for our boys' treatment on ImpactGuru,” Ravi shared. "We request each and everyone to come forward, support our children in living a healthy life and request to contribute and share the details in their networks. We all unitedly can win this battle" Ravi added

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