2 weeks ago
Baby Rishwanth’s SMA Battle Spurs Race for Gene Therapy
Baby Rishwanth has a rare illness called SMA Type 1.
It makes the muscles needed for moving, eating and breathing weaker over time.
His family says he now needs help breathing and receives food through a tube.
Doctors have recommended a one-time gene therapy called Zolgensma.
The treatment is reported by the family to cost nearly Rs 9 crore.
Rishwanth’s parents are trying to raise money quickly because early treatment may lead to better outcomes.
They have raised Rs 25 lakh and have also asked the government for help.
The family recently went to Marina Beach in Chennai to seek public support.
Five-month-old Rishwanth has been diagnosed with severe Spinal Muscular Atrophy Type 1.
His family says he now needs respiratory support and tube feeding because of disease progression.
Doctors have recommended Zolgensma gene therapy, which the family says costs nearly Rs 9 crore.
The family says it has raised Rs 25 lakh through fundraising efforts so far.
Rishwanth’s parents have sought government assistance and recently campaigned at Chennai’s Marina Beach.
- Who
- Five-month-old Rishwanth, his parents and the doctors treating him are involved.
- What
- Rishwanth has SMA Type 1 and needs respiratory support and tube feeding; his family is seeking funds for recommended Zolgensma gene therapy.
- Where
- The fundraising campaign included Chennai’s Marina Beach.
- When
- Rishwanth is five months old; his family recently campaigned for support.
- Why
- The family says it needs nearly Rs 9 crore for treatment and is seeking help before the progressive disease causes further deterioration.
Key facts
- Diagnosis
- Spinal Muscular Atrophy Type 1
- Age
- Five months
- Current support
- Respiratory support and tube feeding, according to his family
- Recommended treatment
- Zolgensma gene therapy
- Reported treatment cost
- Nearly Rs 9 crore
- Funds raised
- Rs 25 lakh, according to the family
- Fundraising location
- Marina Beach, Chennai
Sources
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