KAJANG, July 23 — Six-month-old Sufi Syafrina Mohd Shafiq suffers from a rare disease known as Spinal Muscular Atrophy (SMA) Type 1 and needs funds to buy Zolgensma genetic medicine worth RM9 million.
Former Prime Minister Datuk Seri Ismail Sabri Yaakob who visited the baby at her parents’ house today, hoped that the Health Ministry would help the girl.
“I’ll write an official letter to the Minister of Health Dr Zaliha Mustafa to help the baby through the allocation for treatment of rare disease.
“If the budget is there (and) before we collect the fund from the public, there is some assistance from the government,” he said and hoped those concerned with Sufi Syafrina’s condition to continue to donate for her treatment.
Meanwhile, Sufi Syafrina’s father, Mohd Shafiq Idrus, 38, said that so far, RM60,000 had been collected and the money was used to buy Risdiplam, an oral medication for the treatment of SMA, as well as for her physiotherapy and other medical costs.
“ A bottle of 60 millilitres (ml) of Risdiplam costs RM40,000,” he said.
Those who want to help can contact Mohd Shafiq at 011-59787879 or bank in their donations to Maybank account 562021680453.
