Sharjah baby gets Dh8m lifesaving treatment after winning 'lottery'

Family in tears of joy at brighter future for Malak, who has a rare spinal disorder that killed her elder brother

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A baby in need of an Dh8 million lifesaving drug will receive it after winning a global “lottery” run by the medicine's manufacturer.

Three-month-old Malak Al Alami has spinal muscular atrophy, which killed her elder brother, Abdulrahman, in 2018.

The hereditary disorder causes rapid and irreversible loss of motor neurons that affect muscle functions such as breathing, swallowing and overall movement.

Had she not been selected to receive Zolgensma, the world’s most expensive drug, she could have faced dying before she was two, like her brother did.

I asked the doctor was he joking. He said no, we cannot joke about such topics
Mohammed Al Alami

The National reported on her case last week, when her father, Mohammed Al Alami, a lifelong UAE resident, spoke of the anguish the couple faced at potentially losing their second and only living child to the condition.

He has since been informed Malak was selected to receive the drug free of charge in a global programme by Novartis, which is allocating up to 100 doses at no charge this year.

Novartis appoints a third party to select recipients every two weeks. The family entered Malak into the programme in April.

The treatment will completely cure her, enabling her to live a normal life.

“The doctor said if she takes it before she is six months old, no one would ever have known she was sick. She will be totally fit,” Mr Al Alami said.

“We found out at a very early stage. She can still move her arms.”

Baby Malak has been diagnosed with spinal muscular atrophy, a rare and serious medical condition.

Mr Al Alami, who lives in Sharjah, received the news in the car on the way to the office and struggled to process it.

“My tears started coming,” he said. “I said: doctor are you joking? He said: 'No, we cannot joke about such topics.' And yes, she will get it and she will be better. She will grow up in front of you.

"He said now 99 per cent of the amount has been covered, so we are looking for just 1 per cent of the amount to pay for the admission and the doctor’s amount. I took a U-turn and I went home to tell my wife.

"She started crying and thanking God."

Mr Al Alami said he had never won any sort of competition before and did not consider himself lucky. The couple were told there was little to no hope of being successful through the programme.

"Sometimes whenever I'm going to the shopping mall, using Al Ansari or anywhere, they say ‘okay just submit this one and you will win.’ I never win,” said Mr Al Alami, an accounts administrator who is still repaying debt associated with the treatment for the couple’s son.

“But this is the biggest lesson in my life. Whenever the chance is there, even if it is like 0.001 per cent, you have to catch it. You should not give up. You don’t know which door will open for you.”

Malak will receive the drug, which is delivered by infusion, next week.

There are four forms of the condition and both of Mr Al Alami's children were born with type one, the severest type. Most children born with type one die before their second birthday.

An updated invoice the family has received from Al Jalila Children's Speciality Hospital, where their daughter is being treated, now shows the removal of the Dh8m cost, leaving only the hospital and doctor's fees. It still leaves Mr Alami with a sizeable chunk to pay but it is possible to fund through financing.

“I can see Dh8m has been removed and I am dealing with Dh81,000 or Dh80,000," said Mr Al Alami.

“It can be managed at least.”

Follow baby Malak's updates on the Instagram account managed by her parents.

Updated: July 04, 2021, 8:55 AM