Caelan was diagnosed with Atypical Pantothenate Kinase-Associated Neurodegeneration (PKAN) in 2023. At the time of his diagnosis, Caelan had dystonia in his hands. As the disorder progresses, it is negatively impacting his balance, mobility, and speech. Completing everyday tasks can be challenging for Caelan but he is incredibly strong and resilient.

PKAN is a neurological disorder that belongs to a group of conditions called neurodegeneration with brain iron accumulation (NBIA). PKAN causes progressive neurodegeneration, characterized by iron accumulation in the brain, leading to symptoms like uncontrollable muscle contractions (dystonia), irregular involuntary movements (chorea), rigidity, stiffness, difficulty walking and loss of mobility, speech and swallowing problems, vision problems, and cognitive decline. Although there is no cure for PKAN, there are treatment options that can help reduce the severity of the symptoms.

Caring for someone with PKAN can be challenging due to the progressive nature of the disease, which often requires a multidisciplinary approach, specialized treatments, and assistive devices. The money that we raise will go towards Caelan’s care.

PKAN significantly impacts the quality of life for individuals and families. We are incredibly grateful to have such amazing and supportive family and friends

Recently, Caelen underwent a 12 hour brain surgery to have Deep brain stimulation device implanted to hopefully help with someof his involuntary movements.