Assalamualaikum warahmatullahi wabarakatuh.
My son Muhammad Athif Fahri was diagnosed with a rare disease called SMA (Spinal Muscular Atrophy) type 1, which expert doctors say 60% of babies who suffer from the disease will not survive and reach the age of 2 years. In Malaysia there are only a few cases so far and the average case in the world is 10 thousand/50 cases. For now, there have 3 suitable treatment in Malaysia and the medicine is too costly that can cure it.
At the age of newborn up to 2 months, baby Fahri can still breathe on his own and breastfeed. When he was 3 months old, baby Fahri's muscles got weaker and the doctor inserted a milk tube and baby Fahri had to breathe using a breathing aid (non-invasive ventilator bipap). His hands, feet and all his muscles began to weaken day by day. Baby Fahri often stops breathing, his lips turn blue if the ventilator is opened even for a moment. If before I could take Fahri to bathe in the bathroom, now I only have to wipe baby Fahri on the bed. At the moment baby Fahri still can't lift his legs, head and hands well like other babies.
Once upon a time, baby Fahri stopped breathing and the spo2 oxygen reading dropped to 60%. Upon arrival at the hospital, the doctor said that baby Fahri's no hope for recover but, God still extended baby Fahri's life. It turns out that baby Fahri is a very strong baby against his pain. For now, I go back and forth from Kuantan to Kuala Lumpur as the best effort for my son.
We have been informed by doctors that the available treatment for Fahri is Zolgensma, a single dosage which would cost close to USD 2.125 million/ MYR 9.72 million and is a prescription gene therapy used to treat children less than 2 years old with Spinal Muscular Atrophy (SMA) and Risdiplam, a daily dosage drugs which cost MYR 40400 per bottle (which lasts 50 days). Due to the urgency of Fahri’s condition, doctor have ordered the Risdiplam drug.The Risdiplam drug also only lasts for 50 days per bottle and Fahri needs an estimated 7 bottles of medicine in total within a year. Most children with SMA Type 1 die before their second birthday, if left untreated.
Given Fahri’s current condition, we are faced with the difficult decision by having to proceed with a temporary treatment of Risdiplam while working towards raising sufficient funds for Zolgensma treatment. While the amount of USD 2.125 million is monumental to us, we are hopeful in working towards it as it gives our son the best chance of survival and a better quality of life growing up.
I ask for prayers from all of you. Please help my child, help with the cost of his treatment so that this little child can also grow up and live a normal life. I really hope for your kindness to help baby Fahri.
This is the test we have to accept and as father and mother, we are trying our best to get treatment for baby Fahri, and we will not be able to do it without your help. Please pray that baby Fahri continues to be strong!
