Warning: This story contains graphic images below.
A group in London, Ont. is urging the federal government to allow a refugee family from Syria to relocate to help their critically ill child.
Ezzeddin and Midia Alahmad are parents to one-year-old Tim, who lives with epidermolysis bullosa, commonly known as butterfly syndrome. It’s a rare genetic condition that makes skin so fragile, it’s prone to frequent blisters, tears, sores, infections, and continuous itching.
The family has been living in Beirut, Lebanon, since fleeing the war in Syria, and are currently in an abandoned house with no electricity and limited access to water.
“Our main priority is Tim’s health and for him to get the right medical attention,” Midia said through a translator.
“Changing Tim’s clothes is the most difficult task because we need to wet his clothes so we can safely remove them without it sticking to his skin,” said Midia, adding she also has access to Vaseline but no medication.
Family is here
The Alahmads say if they come to Canada, Tim’s condition could improve. They say they have a network of people willing to help, including Ezzeddin’s brother, Mustafa.
He came to Canada in 2016, and has started a business in London and bought a house. His 10-year-old son also suffers from butterfly syndrome, but now leads a normal life thanks to appropriate medical care in London.
The family also has a group of Londoners who have submitted the paperwork and have raised the money to sponsor them.
Martha Macrae says she and her friends have submitted a Group of Five (G5) refugee application, in which five Canadian citizens privately sponsor a refugee.
She says she’s raised $42,000 for the Alahmads, and has secured a team of doctors, a pediatric dermatologist, and a car donated by Oxford Dodge to help the couple take Tim to his appointments.
“We’ve got everything set up for him and it will transform this kid’s life,” Macrae said.
Waiting on Ottawa
Macrae says she submitted the application to Immigration, Refugees and Citizenship Canada (IRCC) in mid-December. It was missing a Refugee Status Determination document, issued by the United Nations in Beirut, which she said the agency has not given to the couple.
However, the process can be expedited without this document on humanitarian and compassionate grounds, which Macrae says she has requested.
But she hasn’t heard anything from IRCC and has no idea what the status is on the application. CBC News requested comment but did not hear back at the time of publication.
“Everyday this baby is suffering…he’s a real person whose life is torment, and we can help him, all we need is the officials to say yes,” Macrae said.
Ezzeddin and Midia remain hopeful that their son will get a chance at life.
“As parents it’s very hard, we see him suffering, but can’t do anything. When Tim’s in pain, he scratches himself until he bleeds and we can’t stop him, it’s such a helpless feeling,” they said.
Last year, the Alahmad’s said an eight-year-old niece in their family died in Syria due to the same condition because she wasn’t able to get medical care.