Tuberous sclerosis is a rare and complex genetic disorder that causes numerous tumors in many parts of the body. These tumors occur in the brain, kidneys, heart, skin, and other organs, in some cases leading to significant health problems, such as a rare form of epilepsy called infantile spasms which sadly darcie was diagnosed with at just 5.5 months old after having 20+ seizures a day. Infantile spasms is debilitating to the developing brain and often leads to cognitive, neurologic, and/or sensory problems. Most children with infantile spasms will have problems with their development, and may need help with daily tasks throughout their lives.

Tuberous sclerosis complex also causes developmental problems. Individuals with tuberous sclerosis complex often develop a pattern of behaviors called TSC-associated neuropsychiatric disorders (TAND). These disorders include hyperactivity, aggression, psychiatric conditions, intellectual disability, and problems with communication and social interaction. 

Along side this, darcie also fell with in the small 10% that also have Subependymal Giant Cell Astrocytoma (SEGA) which are tumours growing with in the fluid filled spaces in the brain and when they continue to grow will inevitably block the fluid from flowing causing fluid to overflow on the brain, resulting in severe brain damage or death if not treated promptly. 

We still have a long road ahead of us, and plan to take each day and appointment as it comes. We are so lucky we were taken seriously by all medical professionals we came into contact with us, despite it being such a rare condition that isn’t often diagnosed quick enough, Darcie was diagnosed with in 48 hours of turning up at the hospital, and her first brain scan within 24 hours. 

Despite living a nightmare, I hope more awareness can come from this and I would love to raise money for a charity so close to our hearts.  🤍