Support Brayden - Primrose Syndrome

We are a local family with a medically complex child. Due to recent and ongoing medical expenses required to provide him with the care he needs we are seeking the support of friends, family, and community.

Let us tell you a bit about our son. Brayden is a sweet, loving boy who is severely autistic and non-verbal. Since birth Brayden has struggled with intellectual and motor skill delays. At 8 years of age Brayden requires total support with all daily living tasks. Already in his short life he has faced and overcome so many obstacles. His resilience and determination never cease to amaze us.

Recently through the advances in genetic testing our family learned that Brayden has a condition known as Primrose Syndrome. This syndrome is very rare with approximately 100-120 documented cases worldwide and even less that have participated in studies. The syndrome is associated with many of Brayden’s pre-existing conditions such as hearing impairment, apraxia of speech (non-verbal), fine and gross motor skill delays, intellectual impairment, and low/ poor muscle tone. As a result of this diagnosis, Brayden requires regular visits to monitor the progression of cognitive, muscular/skeletal, and behavioral factors associated with this syndrome. Our family travels for these appointments to see pediatric specialists that are familiar with rare syndromes. Brayden requires specialized therapy for maintaining muscle strength and adaptive behavior skills. Due to his developmental delays, Brayden also requires various forms of adaptive equipment to be used inside and outside the home. Around the same time Brayden received the diagnosis of Primrose Syndrome he was also diagnosed with liver disease from unknown cause. Brayden has to get frequent lab work and various types of imaging to monitor his liver health.

Unfortunately, we have found throughout our journey that our insurance does not cover many of Brayden’s expenses. Expenses that are required for him to achieve quality of life.

Thank you in advance for your generosity, love, and support of our child.

Warmest Regards,

The Bergmann Family