Family Struggles to Keep Baby with Rare Disorder Healthy

The family of Katana Morunga, a 15-month-old baby diagnosed with the ultra-rare genetic disorder known as Dnm2 congenital myopathy, is fighting to ensure her survival amid ongoing health challenges. Katana’s condition makes her particularly vulnerable to respiratory illnesses, meaning that even a minor infection could lead to serious complications and hospitalization. She has already been admitted to Starship Hospital in Auckland more than 30 times and has required ventilatory support on two occasions.

Dnm2 congenital myopathy is extremely rare, with only 42 documented cases across North and South America and Europe. There are sporadic reports of cases in India and South Africa. Katana’s mother, Angelica Pohamara, believes that her daughter may be the only known case in New Zealand, a sentiment echoed by Rare Disorders NZ, which has no records of another local patient.

Pohamara, who is 37 years old and has five other children, described the daunting reality of her daughter’s health. “The slightest infection could be fatal,” she told a local publication. Katana was diagnosed with the disorder shortly after birth, leading to a life filled with medical interventions. “When Katana is thriving, she’s thriving… when she’s down, she can be beyond down,” Pohamara added, highlighting the ups and downs of her daughter’s health journey.

Born three weeks premature in 2024, Katana initially showed no signs of her condition. However, by the age of five months, doctors identified hypertonia, which is characterized by increased muscle tone and stiffness. Subsequent blood and genetic testing confirmed the diagnosis, revealing that Katana suffers from a hereditary mutated gene condition. Symptoms can include muscle weakness, facial and eye muscle weakness (ptosis), and respiratory complications.

Pohamara, with ancestral ties to Hokianga and Ngāi Tahu, expressed her devastation upon receiving the diagnosis. “I was blessed to have another girl after five boys. She has brought a whole new perspective to our lives for the greater good,” she said. Despite the challenges, the family strives to treat Katana as normally as possible, though her health means limited exposure to the outside world.

Hospital stays can last a minimum of five days, as Katana does not exhibit distress in the same way as other children. “With her myopathy, it’s a lot harder for her to show that she’s in distress until it’s too late,” Pohamara noted. The family’s concerns are heightened by Katana’s weak immune system, which makes her susceptible to infections.

Rare Diseases NZ has indicated that prior to Katana’s case, no other patients with Dnm2 congenital myopathy had contacted them in New Zealand. “It is feasible Katana is the only one in New Zealand based on international prevalence studies,” a spokesperson stated. The organization has long advocated for a better system to track rare disorders, emphasizing the need for comprehensive data collection to understand the prevalence of such conditions in the population.

Despite the enormous challenges her daughter faces, Pohamara remains optimistic. “Katana is behind in her milestones, but she will get there in her own time when she’s ready,” she said. While her family supports her during hospital stays, Pohamara continues to navigate the fear of germs that could threaten Katana’s life.

The journey of Katana Morunga and her family underscores the complexities and emotional toll of living with a rare, incurable disorder. As they continue to seek appropriate care and understanding from the medical community, they remain hopeful for a brighter future for their beloved daughter.