Baby with rare disease battles for life
Hyderabad: A couple, whose 14-months-old child Ellen is suffering from a severe form of Spinal Muscular Atrophy (SMA Type 1), is trying to raise funds for an expensive treatment through crowdfunding platform Impactguru.com, a press release said. The Telugu-speaking husband and wife, Praveen Rayapudi and Stella, are aiming to raise nearly Rs 16 crore for […]
Hyderabad: A couple, whose 14-months-old child Ellen is suffering from a severe form of Spinal Muscular Atrophy (SMA Type 1), is trying to raise funds for an expensive treatment through crowdfunding platform Impactguru.com, a press release said.
The Telugu-speaking husband and wife, Praveen Rayapudi and Stella, are aiming to raise nearly Rs 16 crore for the expensive treatment, which can save their daughter’s life. Spinal muscular atrophy is a progressive neuromuscular disease caused due to defects in the SMN1 gene. The affected children develop muscle weakness involving upper and lower limbs initially, but over time develop breathing and swallowing difficulty. Life expectancy of children with severe SMA is not more than two years.
Praveen is an employee in a pharmaceutical company and Stella is a housewife. And they are not in a position to afford the expensive treatment of Rs 16 crore that can save their daughter’s life. Till date, more than 700 donors have come forward to raise more than Rs 5 lakh on ImpactGuru for baby Ellen.
Ellen was born on August 20, 2020, and just after four months, the baby started showing unusual signs like her weight was rapidly decreasing, she had no control over her head movement, and she hardly made any body movements.
“Today, my Ellen needs an oxygen mask to breathe. Soon, she’ll need BiPAP support & food pipe as her lungs and digestive system are weakening at breakneck speed.” acknowledges Praveen, Ellen’s Father.
Her mother Stella says that they are determined to save her life. “We won’t let her go like this and are seeking help from all. Through this fundraiser, we aim to save our daughter and give her a chance to live a happy life,” she says.
To donate: https://www.impactguru.com/fundraiser/help-rayapudi-ellen-1-mk
Now you can get handpicked stories from Telangana Today on Telegram everyday. Click the link to subscribe.
Click to follow Telangana Today Facebook page and Twitter .
