The parents of a three-month-old baby with a rare disease have been told she will die if she does not receive a drug that costs Dh8 million ($2.18m).
Mohammed and Nihal Al Alami live in Sharjah with baby Malak who has spinal muscular atrophy (SMA), a disorder that killed the couple's first child, Abdulrahman, in 2018.
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Football fans arrive at Amsterdam Airport Schiphol for their flight to Budapest, near Amsterdam, The Netherlands, 27 June 2021. The Dutch team plays against the Czech Republic in their UEFA EURO 2020 round of 16 soccer match in the Hungarian capital. EPA / RAMON VAN FLYMEN -
Football fans arrive at Amsterdam Airport Schiphol for their flight to Budapest, near Amsterdam, The Netherlands, 27 June 2021. The Dutch team plays against the Czech Republic in their UEFA EURO 2020 round of 16 soccer match in the Hungarian capital. EPA / RAMON VAN FLYMEN -
Dutch presenter Klaas van Kruistum hands football fans a rainbow flag during recordings for the TV program 'Klaas anything is possible,' at Amsterdam Airport Schiphol, near Amsterdam, The Netherlands, 27 June 2021. Van Kruistum hopes to convince fans to speak out in Hungary against the anti-gay law. The Dutch team plays against the Czech Republic in their UEFA EURO 2020 round of 16 soccer match in the Hungarian capital. EPA / RAMON VAN FLYMEN -
Dutch presenter Klaas van Kruistum (C) speaks to football fans during recordings for the TV program 'Klaas anything is possible,' at Amsterdam Airport Schiphol, near Amsterdam, The Netherlands, 27 June 2021. Van Kruistum hopes to convince fans to speak out in Hungary against the anti-gay law. The Dutch team plays against the Czech Republic in their UEFA EURO 2020 round of 16 soccer match in the Hungarian capital. EPA / RAMON VAN FLYMEN -
Dutch presenter Klaas van Kruistum hands football fans rainbow flags during recordings for the TV program 'Klaas anything is possible,' at Amsterdam Airport Schiphol, near Amsterdam, The Netherlands, 27 June 2021. Van Kruistum hopes to convince fans to speak out in Hungary against the anti-gay law. The Dutch team plays against the Czech Republic in their UEFA EURO 2020 round of 16 soccer match in the Hungarian capital. EPA / RAMON VAN FLYMEN
The hereditary disease causes rapid and irreversible loss of motor neurons that affect muscle functions, such as breathing, swallowing, and overall movement.
The most effective treatment, Zolgensma, is also the world’s most expensive drug, costing Dh8 million for the one-time infusion.
Malak’s father, Mohammed Al Alami, 32, an accounts administrator, is already in debt from paying for his son’s treatment.
And, even if he "saved his whole life", he would not be able to afford
Zolgensma.
He is afraid the couple will lose another child.
“She was really good when she was born,” said Mr Al Alami, a Palestinian born in the UAE, talking about Malak.
“At seven days everything was normal, but I was thinking what if she had the same disease, what if she is sick? But I did not see anything to make me think she was.”
Mr Al Alami said he would seek constant reassurance from his family that she was healthy.
He consulted four doctors, but all dismissed his concerns.
“I used to go every two days to the last one. He was saying 'Mohammed, why are you coming daily? There is a huge chance to get infected with Covid-19'," he said.
“'You cannot keep coming to ask if she is normal or not. She is normal'."
Not convinced, Mr Al Alami took Malak to Al Jalila Children's Speciality Hospital.
