Urgent Appeal to Save Vihaan, a 16-Month-Old Baby Diagnosed with Rare Genetic Disorder
Nagpur’s 16 months old baby Vihaan Akulwar has been diagnosed with a very rare genetic disorder called Spinal Muscular Atrophy (SMA). The treatment of this disorder is very expensive. The only cure for this disorder is drug Zolgensma costing 16 crores and it works only if it’s administered in a timely manner. This treatment can cure Vihaan only if he receives it before he turns two. Vihaan needs the drug urgently to be able to crawl, walk. Dr. Ann Agnes Mathew from Bangalore Baptist Hospital is treating Vihaan while Dr. Udani – Hinduja Hospital was consulted initially. Thus Parents of the Vihaan, Vikrant Akulwar and Meenakshi Akulwar have appealed for society’s generous and urgent help to save Vihaan.
Vikrant Akulwar said that he has initiated crowdfunding with help of Impact Guru & Go Fund Me to raise these funds in a short duration. The funds raised across all platforms has been currently reached the amount of four crores plus in total. “But to help Vihaan we really need generous and URGENT support from the society. Few kids in India who have been diagnosed with the same disorder have raised funds through crowdfunding and been cured by ZOLGENSMA,” Akulwar said.
Present Health Status of Vihaan: Vihaan has started showing signs of weakness in legs, breathing, and cannot sit or stand without support. Hence, it is important to make this drug available to Vihaan at the earliest for giving him a fighting chance.
Seeking Support on Social Media: A campaign on social media is also being run and people have started taking cognizance. Celebrities like Sonu Sood, Abhishek Bacchan, Manoj Vajpayee, Rajkumar Rao, Marathi Actor Rururaj Wankhede, Various TV Stars and local community influencers have shown their support. “Still, we are far from reaching the target. Thus every support matters a lot to us,” he added.
The parents are budding salaried doctors, with no private practice, served the local community in various social causes and have been at the frontline during Covid situation in Nagpur for the past two years. This plea for help is difficult and humbling for them, but they believe this will give Vihaan a fighting chance against SMA!
HOW TO DONATE
• Link to donate on Impact Guru –https://www.impactguru.com/fundraiser/help-vihaan-akulwar
What is SMA: Spinal Muscular Atrophy (SMA) is a genetic disorder characterized by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement.
Urgency of Medicine – Currently Vihaan is 16 months old Zolgensma, one-time gene replacement therapy, is most effective if administered as early as possible and needs to be administered before the age of 2-years. The drug has shown positive results in all SMA patients. Once a particular nerve cell dies, the damage is almost irreversible to that part of the body.
Expensive Drug – Cost of the drug is decided by Novartis, the drugmaker. The precision medicine and production time involved in creating this medicine along with one of its kind of medicine make it high priced. The drug literally adds the missing gene SMN1 back to the patient. There is no current drug in the market for competition to bring the prices down.