Dubai: Al Jalila Children’s Speciality Hospital announced that it will administer the one-time lifesaving injection worth around Dh8 million to Iraqi toddler Laveen Jabbar Al Kutyashi on Thursday.
Laveen was diagnosed with Stage II Spinal Muscular Dystrophy (SMA) – a genetic condition that delays motor development – and will received the treatment today thanks to the humanitarian gesture offered by His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice-President and Prime Minister of the UAE and Ruler of Dubai.
The treatment is considered one of the world’s most expensive gene therapy.
Without that one injection that can cure her SMA and reverse the symptoms, her condition would have seriously deteriorated, according to medical reports. Once the injection is administered, Laveen will be under observation around the clock, and will have to undergo a three-month rehabilitation programme, which will include rehabilitation and physical therapy, as well as weekly laboratory tests.
“We have taken all the necessary medical measures for Laveen to take the necessary injection to treat her spinal atrophy disease, and arrangements have been made to ensure the success of the procedure,” said Dr Mohammad Al Awadhi, chief executive officer of Al Jalila Children’s Speciality Hospital, who was quoted in the Arabic daily media.
Laveen’s medical condition captured the attention of Sheikh Mohammed Bin Rashid after the toddler’s mother, Masar Mondal, posted a video on social media last February pleading for help.
On Monday, the parents took to Instagram to post the latest update on the young girl, and said: “Thank you for asking about Laveen. We are waiting for the injection to arrive, and some tests have to be carried out before the treatment can start. She will take it in the next few days, Inshallah. Pray for her.”
What is SMA
SMA is a genetic disease caused by a mutation in the survival motor neuron 1 (SMN1) gene. The gene encodes the survival motor neuron, SMN, protein – a protein found throughout the body, which is critical for the maintenance and function of specialised nerve cells, called motor neurons. Motor neurons in the brain and spinal cord control muscle movement throughout the body.
The disease affects five out of every 100,000 children in the world but in the Gulf region it is more prevalent with 50 cases out of every 100,000 children, according to the Centre for Arab Genomic Studies.