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Monday, September 27, 2021

Amir Tamim steps in to help 2-year-old Libyan child with rare disease

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Duchenne Muscular Dystrophy [DMD] is a genetic disorder that causes muscle degeneration and weakness and tends to be more common among males, though females are carriers of the illness.

Qatar’s Amir Sheikh Tamim bin Hamad Al Thani is reportedly facilitating the medical treatment of two-year-old Libyan child Abdelrahman Al Taleb, who is diagnosed with DMD, Libya’s interim government of National Unity’s platform “Hakomitna” announced on Monday.

“Given that Abdelrahman’s treatment is rare and is available in a limited number of countries, the head of the government of National Unity Abdul Hamid Dbeibah is set to transfer his treatment to Qatar, where its Amir expressed his willingness to receive him,” read a tweet by Hakomitna.

According to Libyan media, the child and his family are expected to travel to Qatar from Turkey – where he was hospitalised – on Tuesday.

The transfer was made possible after Taleb’s arduous battle with the rare genetic disease, which gradually causes muscle degeneration and weakness, was shared on social media and made global headlines.

His mother rallied to raise awareness on her son’s disease after finding herself unable to fund the expensive treatment. Just one dose of the medication needed costs 2.1 million Libyan Dinar [at least $464,916], and it is only available in North America and Qatar.

The Gulf state reportedly offers the treatment for its local patients for free, Libyan media said.

Read also: Sidra Medicine saves life of a baby with ‘rare’ Omphalocele condition

Social media users quickly moved to welcome Sheikh Tamim’s support for the child after months of campaigning.

Oh God, praise be to you, may God heal him and give him health…may God bless everyone who contributed and helped to treat him,” said one Twitter user.

According to Orphanet, a European website that focuses on rare diseases, DMD is more prevalent in male births, with one-in-3,500 infected with the genetic disorder.

The disease rarely occurs among females though those that are infected tend to be asymptomatic carriers. DMD usually occurs in early childhood and can be seen in males when they show a delay in walking or speech after 18 months.

Children with the rare disease cannot run, jump or climb stairs.


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