Description
A 6-month-old baby boy urgently needs help! He has been diagnosed with the extremely rare Spinal Muscular Atrophy (SMA) and requires RM78,904.00 in donations to purchase the lifesaving Risdiplam oral medication.
Baby Ahmad Firash Arsyad Bin Ahmad has a swelling on his chest resembling a protruding bone and struggles to breathe, causing significant movement in his upper body. Since birth, he has had weak arms, slower movements compared to other children, and difficulty even turning his head. His mother is deeply worried and feels helpless.
Case Number 1903: The baby has been diagnosed with SMA Type 1, a rare genetic disorder that progressively affects muscle and nerve function. Timely treatment is crucial to prevent the condition from worsening and endangering his life.
However, treating this rare disease is incredibly expensive. The mother, Nor Shahira Binti Nayan (28 years old), informed us that gene therapy using Zolgensma, which requires a one-time gene injection, costs approximately 1.7 million USD (RM170 million)! Even if they opt for Spinraza (a lifelong treatment), it will cost between RM70,000 and RM100,000 annually.
[Expensive SMA Treatment Costs Lead to a Third Option]
To save her son’s life, the mother has chosen the third option recommended by doctors: using Risdiplam (Evrysdi) oral solution. Each bottle costs around RM39,452.00, and the baby currently needs at least two bottles.
This medication has been approved by the U.S. Food and Drug Administration (FDA) and is one of the special treatments for SMA. It helps produce SMN gene proteins and strengthens muscles in SMA patients. However, Risdiplam is very expensive, and it is not provided for free by Malaysian government hospitals, so the cost for two bottles totals RM78,904.00.
The mother has high hopes for this medication and desperately wants her baby to live a healthy life. She is heartbroken over her baby’s current condition.
[A Mother’s Sacrifice]
Mother Nor Shahira shared that after her baby was born, he exhibited slower movements and difficulty even turning his head. It was only after hospital tests that the SMA diagnosis was confirmed. Since the baby is too young to speak, he can only look at his mother with his big eyes.
Although some have told Nor Shahira that the baby can sense his mother’s feelings, she has only recently come to truly understand this. She wants to protect her baby from her own suffering and feels she is not strong enough, despite her pain. She cannot accept why this rare disease has affected her baby, who is the first child for this young couple, leaving them deeply distressed.
[Father’s Double Blow]
The baby’s father, Ahmad Zulhilmi Bin Ahmad Hawazi (25 years old), received the news of his son’s SMA diagnosis on the same day as the anniversary of his father’s death, which was a double blow for him. Nor Shahira, seeing her husband in grief, could only silently support him. During their conversation, she struggled to control her emotions and shed tears of maternal love.
Ahmad Zulhilmi works as an assistant in a hospital, while Nor Shahira is an accountant. Their modest income cannot cover the enormous cost of the medication, and they have turned to Da Ai for help in their desperation.
The couple only hopes for their baby’s survival, but the medication is too expensive for them to afford. They have sought help from various sources without success. Finally, Nor Shahira has reached out to us for assistance. After understanding their situation, we decided to fundraise for the cost of Risdiplam (oral solution), which totals RM39,452.00 x 2 bottles = RM78,904.00.
We kindly request kind-hearted individuals across the nation to help this baby boy get through the danger. Kindly share this appeal to help us reach our fundraising goal as soon as possible, so that the poor baby boy can receive the help he needs. Thank you.
