Friday, June 21, 2024

Kerala baby with rare genetic disease awaits sponsors

Kerala parents Rafeeque and Mariyumma seek help to save their 18 months old baby Muhammed who is suffering from Spinal Muscular Atrophy (SMA) type 1, a rare genetic disease. The cost for one-time gene therapy would be 18 crore rupees and the drug has to be imported.

“Even if I could not get the medicine, it would be great if my brother could at least receive it, so please help.”, says 15 year old Afra, the sister of 18 months old Mohammed, who suffers from the same disease. Because of her condition, she is dependent on others for even her basic daily activities. She wishes her younger brother to have a better future than her.

Mohammed’s family who live in Mattul in Kannur district, appealed for help to get ZOLGENSMA, which is a prescription gene therapy used to treat children less than 2 years old with Spinal Muscular Atrophy, a serious rare condition of the nerves that causes muscle wasting and weakness. This medicine has to be imported and costs Rupees 18 Crores or 1.79 million Pounds Sterling. It has to be administered before the age of 2, which gives little Mohammed only about 5 months time to receive it.

Following the news published by several media outlets, different community groups and political figures in Kerala have came together contributing their part and appealing for more participation.

Account Name: Mariam PC
Bank: Federal Bank, South Bazar
Account number: 14610100135466
IFSC: FDRL0001461

AC Name: Mariyumma PC
Ac No: 40421100007872
Ifsc No : KLGB0040421
Branch name : Kerala gramin bank, Mattool
Branch Code : 40421
E Mail : [email protected]
Google pay: 8921223421

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