The patient's father: Makrama Mohammed bin Rashid, a new birth certificate for her
Next week, Al Jalila Hospital will start treating little girl Lavigne
Baby Lavigne is 19 months old.
From the source
Dr. Haitham Al-Bashir: Spinal muscular atrophy is caused by a parent carrying the gene that causes the disease.
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Al Jalila Children's Specialty Hospital in Dubai reported that the Iraqi girl Lavin Ibrahim Jabbar (19 months) will undergo treatment next week.
The girl’s father, Ibrahim Jabbar, said, “The initiative of His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President, Prime Minister and Ruler of Dubai, to sponsor Lavigne’s treatment, I wrote a new birth certificate for my child, and we will remain indebted to him for life.”
His Highness Sheikh Mohammed bin Rashid Al Maktoum sponsored the treatment of the Iraqi girl (Lavin) who suffers from Spinal Muscular Atrophy, a rare genetic disease, where the cost of treating the child is about eight million dirhams.
The pediatric rehabilitation consultant, head of the Center of Excellence for Neurosciences, the supervisor of the treatment of the child Lavin, Dr. Haitham Al-Bashir, informed «Emirates Today» that the child will be subjected to treatment next week through an injection given intravenously for one hour.
He explained that SMA disease is caused by a parent carrying the gene that causes the disease, which makes the possibility of transmitting it to children to a large extent, while carriers of the gene that causes neuromuscular atrophy disease are estimated at about 2% of the world's population.
He explained that if a person carries the gene that causes the disease, it does not mean that he has the disease, but rather he may pass it on to one of his children by at least 25% at least.
Al-Bashir emphasized that providing treatment is usually better before the symptoms appear on children, but obtaining it also before exceeding two years enhances the chances of treatment and recovery by a very large percentage.
He mentioned that Al Jalila Children's Specialty Hospital included the treatment of spinal muscular atrophy in its treatment programs at the end of last year, and the child Lavigne is the sixth case to receive this type of rare gene therapy, as two cases were treated in late December, while two cases will be treated this week. Lavigne and another case will undergo the same treatment next week.
For his part, Ibrahim Jabbar, the father of the child Lavigne, said that the initiative of His Highness Sheikh Mohammed bin Rashid Al Maktoum, to treat his daughter, wrote her a new birth certificate, and he and his family will remain indebted to him for life.
He explained that the disease began to be discovered on his daughter about six months after her birth, as her movement gradually decreased, and doctors diagnosed her disease with spinal muscular atrophy, and with the beginning of the Corona pandemic, he and his family were unable to travel outside Iraq to search for treatment, until specialized doctors advised them to travel to Dubai. As Lavigne’s treatment is available at Al Jalila Children's Hospital, and the girl’s mother sent a distress message that was heard by His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President and Prime Minister of the UAE and Ruler of Dubai, and His Highness took care of Lavigne’s treatment.
The father said that despite the absence of any kinship between him and his wife, in order to conduct pre-marital examinations, and they gave birth to their daughter, Laren, who is now six years old, the disease appeared on their second daughter Lavigne, as a genetic mutation, as diagnosed by doctors.
Neuron genes
Iraqi girl Lavigne Ibrahim Jabbar (19 months) suffers from spinal muscular atrophy (stage 2), a genetic disease caused by a mutation in the gene of nerve cells.
The mother of the child appealed, through a video circulated on social media, to His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President and Prime Minister of the UAE and Ruler of Dubai, saying: “To His Highness Sheikh Mohammed bin Rashid Al Maktoum, the honorable descendant of the honorable, in my name My daughter's name Lavigne I send you an urgent distress call, my daughter suffers from a very rare disease, and her treatment is not available in my country, Iraq, and I tried a lot in Iraq and I got too tired, and the treatment is available at Al Jalila Hospital in Dubai, but it is very expensive and exceeds my financial capabilities. The child's age is less than two years.
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