After 4 semi-governmental and private institutions have guaranteed 8 million dirhams
"Munira" begins her treatment in "Al Jalila" with the world's most expensive injection
“Munira” is with the medical team and her family .. Her sister appears in the picture, suffering from the same disease.
From the source
Child Munira after receiving an IV.
From the source
Dr. Haitham Al-Bashir: The girl's condition is very good, and no side effects occurred after she received the injection.
picture
The child (Munira - Syria - three months) began her treatment at the Al Jalila Children's Specialty Hospital in Dubai last Thursday, by receiving an intravenous injection for one hour.
This came after the newspaper "Emirates Today" published on the 23rd of last month the story of her suffering with a hereditary genetic disease since her birth, and her need for treatment with eight million dirhams, until four semi-governmental and private institutions in the country donated the amount to give the child hope for a normal life, after Her family was desperate, in the largest response of its kind to a disease published by the newspaper.
Dr. Haitham Al-Bashir, the pediatric rehabilitation consultant, head of the Center of Excellence for Neurosciences, who supervises the treatment of the child, told Emirates Today that the girl underwent treatment last Thursday through an injection given intravenously for one hour.
He added: “The child's condition is very good, and no side effects occurred after she received the injection, and she was admitted to the pediatric department of the hospital for 24 hours for medical observation and checking on her health condition only, and her medical results were good, and there were no health problems, as The gene therapy protocol requires weekly blood examinations in the first three months of taking the injection, and this is what Munira will undergo, and we will follow up on her condition, and the percentage of treatment effect on her condition during this period.
Al-Bashir explained that SMA 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 the carriers of the gene that causes neuromuscular atrophy disease are estimated at about 2% of the world's population, so someone's carrying the gene that causes the disease does not mean He is infected with the disease, but may transmit it to one of his children by at least 25% at least.
He stressed that providing treatment is usually better before symptoms appear on children, but getting it also before exceeding two years greatly enhances the chances of treatment and recovery.
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 Munira is the fourth case to receive this rare gene therapy.
For his part, “Abu Munira” said: “The donation gave my daughter a new life after she underwent treatment for the injection that she needed, which is the most expensive in the world. She was injected intravenously. ”
He added: “Treating her was a dream that is difficult to achieve in light of the very high cost, and we are proud that we live in a country of humanity whose members and institutions translate the policy of humanitarian charitable work, as I did not expect that the rapid solidarity of my child's case would take place.”
He pointed out: “My daughter’s illness made me in a bad mental state, and I have another eight-year-old girl who suffers from the same disease, and she was diagnosed at Mafraq Hospital previously in Sheikh Shakhbout Medical City, when she was one and a half years old, and the doctors told me that there is no treatment, and these Patients have a certain age due to weak immunity, and the medical support provided to them, and then they die. ”
Genetic disease
The suffering of the Syrian girl is summarized in the fact that she carries a genetic hereditary disease since birth, which is the spinal muscular atrophy, which caused her to be completely unable to move, and to breathe rapidly and continuously, and her heartbeat is accelerating.
According to the Al Jalila Specialist Hospital in Dubai, the girl needs a needle called "Zolgensma", which is a medicinal drug given to children under the age of two years, as a one-time intravenous feeding, at a cost of eight million dirhams, which is an amount that the family does not accept. The "hotline" in "Emirates Today", the people of good and those with merciful hearts, extended a helping hand to save her child from illness.
Emirates Islamic Bank provided four million dirhams, Dubai Islamic Bank provided two million dirhams, while the Dubai International Financial Center provided one million dirhams and Wasl Real Estate Company provided one million dirhams, to complete the amount needed to treat Munira.