When he was just 40 days old, Sami El Khour was diagnosed with a life-threatening disease.
His mother promptly took him to a Gaza hospital when he began to show symptoms of physical discomfort, weakness and difficulty breathing. Their doctor confirmed that he had a rare, inherited disease that causes a buildup of glycogen within muscle cells and results in muscle weakness.
“The medicine Sami needs is extremely expensive and unavailable in Gaza," explained Dr. Abu Fannana.
According to Dr. Maha Abu Fannana, Sami’s physician, “Without treatment, the disease can cause more health complications like hypotonia, heart problems and respiratory system failure. Sadly, these can ultimately lead to death.”
Gaza Aid Limited, Medical Supplies Lacking
Sami’s family had already experienced tragedy when his two sisters were born with the disease and did not survive. The lack of proper testing and health care in Gaza meant that the illness could not be identified in time.
Moreover, once the disease is diagnosed, options for treatment are limited. “I was terrified that the tragedy would happen again,” said Sami’s mother, Sahar.
“The medicine Sami needs is extremely expensive and unavailable in Gaza,” explained Dr. Abu Fannana.
The process of getting medical aid into Gaza is cumbersome due to the blockade, coupled with regular electricity outages.
First, local ANERA staff team up with doctors to calculate the exact number of doses needed for each patient. Then, very specific and thorough travel documents are prepared. Approval must be granted from numerous Israeli and Palestinian authorities before the medicine can start its journey. For Sami's medicine, the vials must be kept refrigerated at all times. This means ANERA staff sometimes have to walk up in the middle of the night to collect the medicine from Erez Crossing and show up with a working refrigerator amid the regular and lengthy power cuts in Gaza.
But thankfully for Sami, ANERA delivers enough of the medicine with each shipment to cover his needs for a full year.
Now in Treatment, Sami Rides His Bike and Goes to School
Sami is now six years old and loves riding his bike and playing with his siblings. He likes to collect seashells at the beach. And like many kids, he has a pesky little brother whom he loves. “I love eating eggs and milk and soups too,” Sami added.
“My only fear is waking up one day to the bad news that the medicine is not available,” said Sahar.
In addition to the medicine he takes, Sami travels to Israel to get speech therapy sessions. His mother accompanies him and has learned how to practice speech lessons at home. She and her husband are now searching for a school for Sami that can accommodate his disease and help him mingle with other children.
“My only fear is waking up one day to the bad news that the medicine is not available,” said Sahar. “I hope this will never happen.”
