Aisha Abdallah has a disorder that requires urgent treatment. The UK government has postponed her family's resettlement, but won't say why
When Aisha Abdallah's parents heard that their family would be resettled in the UK, they were relieved: maybe Aisha would survive.
Her father, Mahmoud Abdallah, fled the Syrian war and his home in Deraa for Lebanon in 2012. The following year, his wife, Asmaa, and their children, followed.
Last year, Aisha was born with a combined immunodeficiency syndrome, a genetic disorder that can only be cured through a bone marrow transplant - and an operation that is not performed in Lebanon. The Abdallahs had already lost another baby to the condition a year earlier.
'The more we wait, the less chances she has to respond positively to the transplant'
- Aisha Abdallah's doctor
So when they were told in November that they had been admitted into the resettlement programme in the UK, which has pledged to resettle 20,000 Syrians by 2020, they started preparing immediately.
They attended a mandatory integration course, had full medical examinations and were told they would depart on 14 December 2017.
But 12 days before the flight, the International Organisation for Migration (IOM) called to tell them that their departure had been postponed.
"I asked them about the reasons behind the sudden change of plans," said Mahmoud. "They told me they received a phone call from British authorities asking them to the postpone our family's departure."
Nearly three months later, Aisha's condition has rapidly declined, according to her haematologist. She has caught several serious infections and started losing weight drastically to the point that she is compromising her chances of having a successful bone marrow transplant.
"She needs to be able to undergo the operation, a very demanding procedure. The more we wait, the less chances she has to respond positively to the transplant,” said the doctor, who has treated Aisha since she was three months old, but preferred not to give his name because of sensitivities around the case.
Meanwhile, Mahmoud and his wife, Asmaa, are still looking for answers about why their arrival was delayed and when they might leave.
Aisha in November 2017 (MEE/Abdallah Family)
A spokeswoman for the Home Office refused to discuss the specifics of the case.
They said: "The government takes seriously its commitment to vulnerable refugees escaping conflict. We work closely with UNHCR [the UN High Commissioner for Refugees] to achieve the best possible outcome for all families referred to the UK.”
As of last week, the UK has admitted 10,000 Syrian refugees. Despite its pledge to resettle another 10,000 in the next two years, critics say the government could go further to help those fleeing the war.
While they wait, Aisha's parents continue to administer their one-year-old with regular immunoglobulin infusions, but the treatments are only a temporary solution and are a major financial burden as the weeks drag on.
Most employers do not offer medical coverage for Syrians and refugees are only partly covered by UNHCR, explained Marie Daunay with the Lebanese Centre for Human Rights (CLDH) who is helping the Abdallahs with their case.
"UNHCR doesn't cover the high costs of the infusions, which means that the family needs to raise $390 every three weeks. This is very hard for Syrian workers who earn around $500 a month," Daunay said.
So far, local NGOs have managed to cover the costs.
'Dying during the process'
Aisha's case is not an isolated one. Faten, a Syrian refugee in Lebanon who was in need of urgent cancer treatment, registered with the UNHCR at the end of 2016.
Her sister, Leila, told MEE that Faten was notified of her family's admission into the UK's resettlement programme eight months later, in August 2017.
"Eight months is too long for a medical emergency. Given that Faten was also a widow and a mother of three with no income, she was fulfilling several criteria of vulnerability mentioned in the UNHCR's resettlement handbook. Her file should have been processed faster," said Daunay from CLDH.
'There have been several cases of patients, among them children, dying during the process of resettlement, partly because the urgency of their case was not well evaluated'
- Marie Daunay, Lebanese Centre for Human Rights
Faten's departure, eventually scheduled for mid-September, was cancelled hours before their flight on grounds that she was too weak to travel.
Faten died three days later, leaving her three children and sister behind. The children eventually travelled to the United Kingdom without their mother, left with the sense that she missed out on the opportunity to receive better treatment and be reassured about her children's future.
"There have been several cases of patients, among them children, dying during the process of resettlement, partly because the urgency of their case was not well evaluated," said Daunay.
'Exploring all avenues'
In Aisha's case, the fact that she was scheduled for resettlement months ago meant that the family kept waiting, losing precious time given their daughter's condition.
"We did not look for alternative solutions because we trusted UNHCR and the UK to process Aisha's file with the urgency it deserves,” said Daunay.
The baby was readmitted to the hospital on 6 February with a new, multi-systemic infection. "Her general condition has been unstable since and she is at risk of having a fatal septic shock at any time," said Aisha's doctor.
In recent days, she has been on the brink of death several times.
A UNHCR spokesman told MEE that the agency "is fully aware of Aisha's case and is exploring all avenues given the severity of her condition".
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The spokesman said that, for legal reasons, he could not discuss the case further, adding that "every effort is being undertaken to help Aisha".
Aisha's disillusioned parents are not waiting any longer and are exploring alternative options to save their daughter.
One appears to be transferring Aisha to Bambino Gesu Hospital in Rome, Italy which has told CLDH they would be willing to do a bone marrow transplant.
But in order to have access to the treatment, the family still needs to be transferred to Italy which will likely require yet more paperwork. Stuck in administrative limbo, the Abdallahs still hold out hope that the UK might be their new home.