Coimbatore: Another case of spinal muscular atrophy has been reported in a 23-month-old child Mithra in Coimbatore, months later when the child born to Muslim couples in Podanur near Coimbatore reported the same genetic disorder which has to be treated immediately.
Coimbatore: Another case of spinal muscular atrophy has been reported in a 23-month-old child Mithra in Coimbatore, months later when the child born in Podanur near Coimbatore reported the same genetic disorder which has to be treated immediately.
A letter released by the KMCH hospital MD Dr. Pradeep Kumar said the child requires immediate treatment and that the drug required for it is ZOLGENSMA, which costs around 16 crore rupees plus import duty and GST.
This life saving drug should be given to the baby before she turns two which will be in one month.
As soon as the news surfaced on social media, the assistance has been sought from politicians including Tamil Nadu Chief Minister M.K. Stalin for the child. Assistance has been sought from Prime Minister’s National Relief Fund too.
The drug ZOLGENSMA is a life saving one approved by United Kingdom’s National Health Services on March 9,2020 and manufactured by US-based Swiss bio-pharmaceutical company Novartis Gene Therapies.
Spinal Muscular Atrophy is a rare hereditary disease caused by one missing gene or the deficiency of a functional survival motor neuron 1 (SMN1) gene, according to study.
This hereditary defect results in rapid and irreversible loss of motor neurons, affecting main muscle functions like breathing, swallowing and basic movements. However, the prevalence rate of this is 1 in 10,000 children. In recent times, India has seen three such cases while two are from Coimbatore and one from Mumbai. Studies also say that the reason for the cost of this drug is only because of its potential to save lives.
While this comes as one dose drug to save lives, it is also said that the drug functions in a way that it has a replica of the missing gene, which when passes into nerves produces proteins necessary for nerve function and control muscle movement.
Doctors also stress on the importance of examining liver of the affected ones as the common side effects of this genetic disease causes liver enzymes and those found to have it are advised to go through medical procedures before going for the treatment. However, the child in Coimbatore is said to have no such issues.
To help Mithra, please click this link to donate: https://www.ketto.org/fundraiser/my-baby-battles-for-her-life-and-we-need-your-support-to-save-her-436165
