A father has described his immense gratitude after his baby received a life-saving, Dh8-million drug and a UAE businessman helped to cover medical costs..
Mohammed and Nihal Al Alami’s three-month-old child, Malak, was born with spinal muscular atrophy. It is a disorder that killed the couple's first child, Abdulrahman, in 2018.
The hereditary disease causes the rapid and irreversible loss of motor neurons. This affects muscle function, impairing breathing, swallowing and overall movement.
On Sunday, doctors at Al Jalila Children's Speciality Hospital in Dubai administered Zolgensma, the world’s most expensive drug, after Malak won a global “lottery” run by the Novartis, the medicine's manufacturer.
But almost Dh82,000 to cover hospital and doctors' fees remained outstanding.
Mr Al Alami, who is still paying back debts associated with the treatment of his first child, faced taking on even more finance to pay for it, until UAE businessman Hasan Al Fardan stepped in.
The chief executive of Al Fardan Exchange made the donation after reading about Malak’s plight in The National.
Mr Al Alami said he “felt like mountains in his chest” had been removed after Malak received the treatment, which will help her to live a normal life.
“Now I have peace of mind. Today I ordered food and I could taste it,” he told The National.
“I have been eating just to survive these last few years. Today when I started eating I thought: ‘I am eating. I can taste.’”
He said he did not know how to thank Mr Al Fardan for his support.
“The hospital told me: 'Mohammed, no need to be worried about this, just be with your daughter. No need to think about any financial things because we are in direct contact with Mr Al Fardan',” he said.
Mr Al Fardan said Malak’s story “moved him to the core”.
“I am a father of two beautiful daughters myself and I couldn't begin to fathom what her parents must have been going through,” he said.
“As a father, I couldn’t begin to imagine how difficult it must be to lose a child, let alone live in constant fear of the same happening to your second.”
Mr Al Fardan said his family is blessed to be in a position to help others in need.
In March, he paid the Dh57,000 hospital bill for the care of twins who were born prematurely in Dubai.
“We are thrilled that baby Malak will have an opportunity to grow up with her parents and live a healthy and happy life,” Mr Al Fardan said.
“I grew up in a family where giving back is a responsibility and I will always live by that. I’m very happy to know that, by God's grace, baby Malak will get a second chance in life."
There are four forms of spinal muscular atrophy and both of Mr Al Alami's children were born with type one, the severest form.
Children born with type one typically die before their second birthday if it is not treated.
“I said to the doctor I will help Malak reach the level where she will be a doctor, inshallah, in 20 years," Mr Al Alami said.
“And she will provide help for the public for free."