A Danish family is fighting a difficult battle to keep their terminally ill teenage son at home. The boy’s rare disease has left him completely dependent on care, and his parents are struggling to secure the support they need from their local authorities.
A Rare and Cruel Disease
Sixteen-year-old Felix Krarup Golding from Frederiksberg is living with metachromatic leukodystrophy, or MLD, a rare inherited disorder that causes the body to shut down gradually. He was diagnosed at the age of six, and over the years, he has lost almost all physical abilities. Today, he cannot speak, walk, or move his arms and is fed through a tube.
Despite this, his family says Felix can still communicate through his eyes and body language. Small expressions and reactions show how he feels, and his parents have learned to read them.
Felix’s parents, Kevin and Sofie Krarup Golding, believe he thrives best when surrounded by family rather than in an institution. They want him to live his final years at home, where he feels safe and loved.
A Struggle for Support
Caring for Felix requires round-the-clock medical supervision and daily assistance. His condition means he can stop breathing if his head falls forward or his tongue blocks his airway. The workload is enormous and affects the entire family, especially since Felix’s younger brother suffers from the same disease.
To make home care possible, the Goldings have requested extended support from their municipality. However, Frederiksberg Municipality instead offered them a specialized care facility in Aarhus, nearly 300 kilometers away. The parents declined, insisting that distance would make it impossible to spend meaningful time with Felix during his remaining years.
Because of that, they now find themselves caught in an ongoing dispute with the local authorities. At one point, their night caregivers were withdrawn, even though doctors considered them essential. Temporary assistance was later reinstated while the case awaits a final decision from the national appeals board, Ankestyrelsen.
Balancing Family, Work, and Care
Felix’s parents say the current arrangement leaves them exhausted. Sleep is scarce, and daily routines are almost impossible to maintain. They emphasize that they are willing to handle much of the care themselves, but without professional help, their other children will suffer too.
The parents have also shared their story publicly, hoping to highlight how the welfare system can better support families with seriously ill children in Denmark. The case touches on how local governments balance compassion and legal responsibility when dealing with home-based care under the Danish healthcare system.
The Municipality and the Law
Frederiksberg Municipality has stated that every case must comply with existing laws and be medically sound. Officials argue that some children require specialized treatments that cannot always be provided at home. Still, the municipality’s decision to remove night caregivers was overturned by Ankestyrelsen. The family now waits for a new ruling, expected in mid-December.
While the legal process continues, Felix remains at home with temporary professional assistance. His parents say he has become more alert and responsive since returning from institutional care. For them, this improvement shows how important being at home is for his well-being.
Fighting for Dignity
The Golding family’s struggle has become more than a private matter. It reflects a broader question about whether families with terminally ill children receive sufficient practical and emotional support. Felix’s parents say their goal is simple: to give their son as much love, comfort, and quality of life as possible in the time he has left.
They know that time is limited. But at home, surrounded by his parents and siblings, Felix is calmer and more present. That, they believe, is what matters most.
Sources and References
The Danish Dream: Danish Healthcare Explained for Tourists & Expats
TV2: 16-årigs krop lukker langsomt ned, og familien kæmper for at have ham hjemme
