The Jordanian baby Maria – who is no more than 10 months old – is fighting a tough battle against the most serious and first-degree spinal muscular atrophy (SMA Type 1) disease, amid urgent humanitarian appeals to arrange for a genetic treatment that would save her life, at a cost of $2.5 million.
Speaking to Al Jazeera, Enas Al-Liftawi, the girl’s mother, recounted the details of her only daughter’s daily suffering, explaining that this rare genetic disease gradually damages the nerve cells that control the muscles, threatening her ability to move, breathe, and swallow. She pointed out that Maria is unable to play, crawl, or sit on her own without support.
Daily suffering and winter challenges
The smallest daily details turn into tasks of extreme precision and caution, as the process of breastfeeding a baby girl requires holding the milk bottle at all times and in a specific way to avoid the risk of suffocation, while doctors prohibit feeding her solids without special training and evaluation from a swallowing consultant. As the baby’s weight increases, it becomes more difficult for the mother to carry her as her entire body becomes more relaxed.
With the advent of winter, fears of exposure to the cold or accumulation of phlegm in the chest multiply, which may cause pneumonia, forcing the family to put their child on a respirator.
Appeal to save lives
Although the family is currently resorting to physical therapy sessions, the mother confirms that the only hope of saving Maria’s life lies in the expensive gene therapy needle, which is not available in Jordan.
In the face of this great challenge, Enas sent a humanitarian appeal to every concerned party or person capable of adopting her child’s condition and providing her with treatment.
She concluded by saying in a tone mixed with pain and determination, “Maria is my only daughter… the soul of my soul, my life, and my weak point. I am ready to do anything for her, and it is impossible for me to hope or despair until I get her to treatment, God willing.”
Spinal muscular atrophy is a hereditary genetic disease that makes the muscles weak and causes movement problems. The disease worsens over time. There is no current treatment for it, but there are treatments that help the patient deal with the symptoms and improve his life.
It affects infants, and symptoms appear during the first 6 months of life. They have severe weakness in the arms and legs, difficulties in moving, eating, breathing, and swallowing, and the child cannot raise his head or sit. People infected with this type usually die in the first years, as a result of breathing problems.