The Macall family has returned to Sweden after spending five months in China seeking treatment // Photo: SVT
The Macall family has returned to Sweden after spending five months in China seeking treatment for their two-year-old daughter, Alma, who suffers from metachromatic leukodystrophy (MLD). Although the disease could also be treated in Sweden, Alma was denied access to the necessary treatment. This rare and often fatal genetic disorder affects the nervous system and leads to severe neurological decline.
During their time in China, Alma underwent gene therapy that has shown positive results. Her father, Juan Macall, expressed a mix of relief and exhaustion, stating, “It feels really good, but it has been very challenging.” The family left their home in search of a life-saving solution, and now they hold hope for Alma’s recovery.
“Despite the circumstances, we believe Alma is doing well. She seems painless, isn’t taking any pain medication, can swallow and eat by herself, and sleeps soundly,” Juan shared. However, he noted that Alma is tired and worn out from the treatment, with her recovery expected to take between eight months and a year and a half.
Concerns for the future
While there are encouraging signs of improvement, uncertainty remains. Doctors and researchers in China cannot definitively predict how long the beneficial effects of the treatment will last. “We have their studies, and one patient treated in 2013 is still alive. This gives us hope that Alma will likely live for at least another eleven years after the treatment,” Juan explained.
The entire journey cost the family approximately 2.5 million kronor, with 2 million raised through donations from individuals and organizations that came together to support them. While the family is grateful for the assistance, they question the Swedish healthcare system, where the same treatment would have cost around 20 million kronor and was initially denied to Alma.
Now, the Macall family is advocating for change in Sweden’s healthcare policies. “No one should have to leave Sweden to receive treatment available here. We want parents to feel they have done everything for their children and that Sweden does not turn its back on these kids,” Juan asserted.
As the family settles back home, their experience highlights the challenges many face in accessing critical medical treatments. The Macalls remain hopeful for a brighter future for Alma and other children facing similar health battles.
Source: SVT