$1m short: After losing one baby to rare disorder, this family is raising funds to save their second
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After losing their first child to a rare genetic disease, a couple is now racing against time to raise the remaining $1 million they need to save their second child, who has been diagnosed with the same condition. Speaking to AsiaOne on Tuesday (March 24$1m short: After losing one baby to rare disorder, this family is raising funds to save their second
After losing their first child to a rare genetic disease, a couple is now racing against time to raise the remaining $1 million they need to save their second child, who has been diagnosed with the same condition. Speaking to AsiaOne on Tuesday (March 24), Norhaziqah Rosli, 35, said although her 10-month-old son Faziq has yet to show any symptoms, the «fear is always there». When her late son Faris was diagnosed with Spinal Muscular Atrophy (SMA) in 2017, doctors told Norhaziqah and her husband, 37-year-old Rahman Rahim, to be «mentally prepared». At the time, gene therapy was not yet available and despite efforts, Faris died on June 24, 2022 before his sixth birthday. When she was expecting Faziq, her fourth child, she received the frightening news during her second trimester that he had SMA. Norhaziqah said doctors were already prepared to give Faziq the oral medication Risdiplam to delay the disease progression and he has been taking it since birth. He is also undergoing physiotherapy at National University Hospital (NUH). Read more
