Family Fights to Protect New Zealand’s Only Baby with Rare Disorder

Katana Morunga, a 15-month-old baby from New Zealand, is at the center of a family’s desperate fight to keep her alive. Diagnosed with Dnm2 congenital myopathy, an extremely rare genetic disorder, Katana’s condition makes her highly susceptible to respiratory illnesses. A minor infection could lead to a serious hospitalization, as she has already spent time in Starship Hospital on 30 occasions, requiring ventilation twice during her brief life.

The rarity of Dnm2 congenital myopathy is staggering. Research has identified only 42 patients across North America, South America, and Europe with this condition. Additionally, there have been a few documented cases in countries like India and South Africa. Katana’s mother, Angelica Pohamara, believes her daughter is the only known New Zealander affected by this incurable disorder. This claim is supported by Rare Disorders NZ, which has no record of any other cases in the country.

Katana’s journey has been fraught with challenges. Each hospitalization serves as a reminder of the precariousness of her health. As her family navigates the complexities of her condition, they are met with a mixture of emotional strain and unwavering determination. The fight to maintain Katana’s health is not just a personal battle; it underscores the broader implications of rare genetic disorders and their impact on families.

In the face of these challenges, Angelica’s resolve remains strong. She seeks to raise awareness about Dnm2 congenital myopathy, hoping that sharing Katana’s story might contribute to broader discussions around the disorder. The family is also advocating for more research and support for those living with rare diseases, emphasizing the need for comprehensive healthcare resources.

Despite the difficulties, moments of joy punctuate Katana’s life. Her personality shines through, capturing the hearts of those around her. The family cherishes each laugh and smile, holding onto hope as they face the uncertainties ahead. For Angelica, every day is a testament to Katana’s strength and resilience.

The story of Katana Morunga is not just about a rare condition; it encapsulates the trials and triumphs of families caring for children with complex healthcare needs. As they continue their fight, they shine a light on the challenges faced by families dealing with rare diseases and the urgent need for research and support in this field.