Udupi: After the family from Kerala raises Rs 18 Crore through Crowdfunding in one week for the care of their children suffering from spinal muscle atrophy (SMA), the father of a five-month-old baby in Udupi is seeking the same financial support for his son who also suffered from the same disease , Sandeep D, 34, an electrician from Belman Village, said his son Mithansh S devadiga suffered from type – 1 high school from birth in accordance with the test carried out by the Ministry of Medical Genetics, KMC, Manipal, on July 12.
“We may need at least 16 crore Rs for his treatment at Hinduja Hindu Hospital in Mumbai.
The doctor suggested we tried crowdfunding.
I was without work because of Covid-19.
My wife Ranjitha is a housewife,” Sandeep told Tii.
He has submitted a crowdfunding request through Milaap and Impactguru, online crowdfunding platform.
At present, the child is accepted at Koosamma Shambhu Shetty Hajj Hospital Mother & Child Haji Abdullah (Govt Hospital) in Udupi.
Mithansh, who was born on February 27, was hospitalized on Saturday after he developed respiratory problems.
The old man initially became suspicious about Mithansh’s health after they found him lacking the movement of limbs.
“Initially, we took it to Doctor Ayurveda, and we found an improvement in child’s health.
Then, when he developed difficulty breathing, we took him to KMC Manipal, where he was diagnosed with high school – type 1,” he added.
Dr.
Sweta Shanhag, a child doctor consultant in a government hospital, has certified that Mithansh has undergone genetic testing (MLPA) that shows high school – type 1.
“The child has a milestone, often episodes of difficulties in feeding and respiratory disorders.
Parents have counseled to approach higher centers, where these cases are managed (Baptist Hospital, Bengaluru Hospital or Hinduaja, Mumbai).
The child is required to be treated with Zolgensma, which is estimated to cost around RS 16-18 Crore, “said Dr.
Sweta,” said Dr.
Sweta, “said Dr.
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Sweta.
What is high school: high school is a progressive neuromuscular disease caused by the loss of nerve cells, Which carries an electrical signal from the brain to muscle.
The protein needed for this signal is encoded by genes, SMN 1, where everyone has two copies – one from the mother and the other from the Father.
A child Develop high school only if both copies are wrong.
Without treatment, this disease is fatal.
Zolgensma, the most expensive drug in the world, is an intravenous injection of a single dose of gen therapy, where the damaged SMN1 genes are replaced through adenoviral vectors.