Ten-month-old Mohammad Usman Ali have been found suffering from rarest of disease called Spinal muscular atrophy (SMA). Ali, resident of Tanahu, deulegauda sunapa-4, is just the 2nd case in Nepal with such disease.
Previously there has just been one instance in Nepal with such case. First case if such disease was first discovered in Siyona Shrestha, who is now undergoing treatment in Dubai.
The disease was discovered in Ali by Dr.Bina Prajapati Manandhar, who says that he has been suffering from this disease since he was 6 month old. His report was sent in Lal PathLabs in India, where it was discovered that he is been suffering from SMA level 1.
Spinal muscular atrophy (SMA) is a group of hereditary diseases that progressively destroys motor neurons, nerve cells in the brain stem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing, leading to muscle weakness and atrophy.
Spinal muscular atrophy (SMA) most often affects babies and children and makes it hard for them to use their muscles. When child has SMA, there's a breakdown of the nerve cells in the brain and spinal cord. The brain stops sending messages that control muscle movement.
The treatment of this disease is very expensive and is not possible in Nepal, itself. Family of Ali has been pleading for help for the treatment. They have launched crowdfunding campaign in GoFundMe but amount of fund they have raised till now is very little.
As per doctors he needs to diagnosed with ZOLGENSMA. As a gene therapy, ZOLGENSMA® (onasemnogene abeparvovec-xioi) is designed to target the genetic root cause of spinal muscular atrophy (SMA) by replacing the function of the missing or nonworking SMN1 gene with a new, working copy of a human SMN gene. ZOLGENSMA does not change or become a part of the child’s DNA. The cost of ZOLGENSMA itself is $2.125 million and the total cost is said to be around $2.5 million.
Ali's family is not in position to afford such huge expense. Mubarak Ali, Usman's father feels that he and his family has been undergoing tough condition since the discovery of disease.
However, he is hopeful that he will get enough help from everyone and one day his son will be normal.
'I would like to request each and every individual and organization for contribution towards the treatment of the child, every contribution count, regardless of amount'. Sapana Miya, Usman's mother says that child was very normal till he was 5 months. But he did not show signs of moving, trying to walk, moving head etc. when he was 8 months, he wasn't like other normal babies at that age, so they took him to hospitals around Nepal.
Currently child is in Kanti Child Hospital. Doctors have said might need to be airlifted to India or Dubai at any moment, for this his family and relatives are running around Kathmandu to make arrangement for necessary fund.
Currently fund-raising campaign for his treatment has been going on in Nepal and abroad as well. As per his father, Mubaral ali, till august 25th, 2021, 2.6 million Nepalese rupee has been received at bank account.
They have set up a campaign called #Saveusman and pleaded everyone one help. Donation can be made following way.
How to help USMAN ?
There are 6 ways to help USMAN.
1. Through Bank account:
Name: Mohammad Usman Ali
Account No: 17200068A6
BANK: Prime Commercial Bank
Branch: Dulegunda
Swift Code: PCBLNPKA
2. Through Direct link to Esewa
https://esewa.com.np/#/make_payment/NP-ES-USMAN/SaveUsman
3. Through Esewa,
Open your Esewa Account and Type saveusman in search button.
4. Through QR CODE
