Chris El Kik has Duchenne muscular dystrophy, one of the most severe types of inherited muscular dystrophy, which causes the muscles to weaken and affects mobility in the long run.
Qatar has stepped in to treat a four-year-old Lebanese child with a rare muscular dystrophy disease, though his treatment has yet to be available in Doha, Lebanese authorities confirmed on Tuesday.
In a joint statement, Hector Hajjar, Lebanese Minister of Social Affairs said Chris El Kik travelled to Doha for medical examinations at Sidra Medicine. However, the statement did not mention the travel date.
Hajjar confirmed that he worked closely with Qatar’s Ambassador to Lebanon, Sheikh Saud bin Abdulrahman Al-Thani, and Lebanon’s Ambassador to Qatar, Farah Berri, to facilitate the child’s travel.
“We are awaiting an official answer from the authorities concerned with this file,” the joint statement read.
El Kik’s $3 million treatment, Elevidys, is currently unavailable in Qatar and could take time to reach the country, Hajjar and the child’s family explained.
“The family of the child, Chris El Kik, and Minister Hector Hajjar extend their great thanks and gratitude to the State of Qatar for its efforts to address this humanitarian issue and the attention that the El Kik family received during their stay in Sidra Hospital,” the statement concluded.
El Kik’s story went viral in January after his family started an online campaign seeking financial donations to secure their child’s treatment.
The child has Duchenne muscular dystrophy, one of the most severe types of inherited muscular dystrophy. The disease causes the muscles to weaken and affect one’s mobility in the long run.
Globally, there are less than 10 cases of the disease reported among every 100,000 people.
The symptoms can first occur at the age of two or three, preventing the child from jumping, running, and walking. Patients usually die in their twenties as the disease gradually weakens the respiratory muscles.
“Our strong soldier is currently in a race against time. Although the U.S. Food and Drug Administration approved Elevidys, the first gene therapy for pediatric patients between four and five years old, this treatment costs around $3 million dollars,” the child’s GoFundMe page says.
The page added that El Kik’s “skeletal muscles begin to deteriorate, leading to paralysis, heart and lung failure, and early death” if treatment is not made available in time.
“Every dollar brings us closer to Chris’s graduation, first job, wedding, and the birth of his sons and daughters. Your contribution is his lifeline. The sense of purpose and knowledge that you’ve made a difference in a child’s life is a priceless gift,” the page added.