Pune: Baby With Genetic Disorder Needs Rs 16 Crore Therapy To Live
Pune, 12th July 2021: Pune-based couples are raising funds for their 15 month old daughter Anvi Suraj Wavhal who has been diagnosed with Spinal Muscular Atrophy SMA Type 1, SMA is said to be a deadly genetic disorder. To raise the fund Suraj Wavhal registered daughter’s details with crowdfunding platform Impact Guru.
Avni from a very young age is battling from SMA genetic disorder; she is undergoing treatment at Deenanath Mangeshkar hospital and research centre. The estimated cost of the whole treatment is around Rs 16 crore. The drug, Zolgensma to treat SMA is very expensive. This drug has to be imported and is commercially available in the USA for approximately 16 crores.
Suraj Wavhal told Punekar news, “That his daughter developed multiple issues like heavy breathing, she couldn’t move her lower body and the couple took her to the family doctor who suggested delay development but later on they took her to a paediatric neurologist. Following the genetic test, she was diagnosed with SMA type-1.”
Wavhal is a software engineer in Pune. When he got to know that his daughter is suffering from a rarest genetic disorder and the treatment is quite expensive he started raising fund to cover the cost of Zolgensma therapy. Regarding the treatment, the couple reached out to several doctors and Dr Sandeep Patil from Deenanath hospital helped and assured that this therapy can save their child.
SMA Type-1 is a progressive, rare genetic disease that is caused by missing genes or those that don’t work properly, which might be survival motor neuron 1 (SMN1). This gene is basically the blueprint responsible for making a protein required for the survival of the spinal nerve cells. Without this SMN gene, the cells in the body start to die and motor neuron cells become weaker thus causing muscle weakness in every part of the body below the neck.
https://www.impactguru.com/fundraiser/help-anvi-suraj-wavhal
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