Ghanim Al-Muftah, who together with Morgan Freeman, one of the most recognized actors in Hollywood, performed at the opening ceremony of the 22nd FIFA World Cup, he is a Qatari and a FIFA ambassador in 2022. I’m 20 years old. He was born in May 2002 as one of twins. He has been battling a rare disease since birth. caudal regression syndrome (caudal regression syndrome)through which the spine and lower parts of the body do not develop properly. The 20-year-old has no legs, basically ¾ of his body is missing.
Doctors did not give Ghanim much chance of survival. However, the parents promised each other that “they will be his right and left leg”, and the boy will lead a fairly normal life. Today, he successfully pursues his passions, being under the constant care of doctors, undergoing subsequent operations and undergoing rehabilitation.
Ghanim is rarely in a wheelchair, preferring to be on his hands“because he believes he should make use of everything he is endowed with instead of focusing on what he doesn’t have.” His approach inspires millions of people around the world. Ghanim studies political science, is an entrepreneur (owns his own company), motivational speaker and YouTuber. He hopes to become a diplomat and Paralympian. Despite his disability, he lists swimming, diving, soccer, hiking and skateboarding as his favorite sports. He plans to climb Mount Everest.
The 20-year-old’s caudal (caudal) regression syndrome is a rare, congenital syndrome that results in impaired development of the lower half of the body. A wide range of abnormalities can potentially occur in infants, including abnormal development (including agenesis, which is defined as a state in which an organ fails to form, with consequent failure to develop an organ) the sacrum and coccyx, as well as the lumbar spine. In some cases, more serious malformations may occur. Disturbances in this part of the spine can cause a number of additional complications, including joint contractures, clubfoot, or rupture or damage to the lower part of the spinal cord. There may also be additional abnormalities from the gastrointestinal tract, kidneys, heart or respiratory system.
The exact cause of caudal regression syndrome is not known. Some Research suggests that diabetes during pregnancy, especially if left untreated, may increase your risk of developing it. However, the disorder is also diagnosed in infants born to women who do not have diabetes, so both environmental and genetic factors are suspected to play a role in its development.
It is estimated that 1 to 2.5 in 100,000 are born with caudal regression syndrome. newborns. The first symptoms of the disease usually appear between the 4th and 7th week of pregnancy. In most cases, the condition can be diagnosed by the end of the first trimester.
The symptoms and severity of the disease can vary greatly from person to person. The tail regression team represents spectrum of different ailmentsfrom cases with milder symptoms to cases with severe, disabling or potentially life-threatening complications. Those affected may not have all the symptoms, and one child’s experience may be different (sometimes dramatically) from another. In caudal regression syndrome, the bones in the lower part of the spine may be misshapen or missing.-
Among the abnormalities that appear in patients, the following are mentioned:
- curvature of the spine,
- narrowing of the hips,
- poorly developed buttock muscles,
- buttocks flattening,
- reduced muscle mass in the legs,
- flexion contractures of the knees and within the hip joint,
- clubfoot (a deformity consisting in fixed plantar flexion of the foot and adduction of the forefoot),
- minimal sensation in the lower parts of the body,
- kidney agenesis,
- kidney ectopia, i.e. their incorrect location (any abnormalities affecting the kidneys can cause obstruction of the urinary tract, neurogenic bladder or abnormal backflow of urine from the bladder into the ureters – vesicoureteral reflux),
- no genitals,
- non-perforated anus.
Congenital heart defects and respiratory complications may also be associated with this disorder.
Treatment of caudal regression syndrome is targeted at the specific symptoms that each individual suffers from. Treatment most often requires coordinated efforts of a team of specialists – including orthopedic surgeons, neurologists, nephrologists, paediatricians, cardiologists. Repeated surgeries and rehabilitation may be necessary for the rest of your life.
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