Never living a dull moment.
My Background
Daily Devotionals
Daily Devotionals
I'm Alexis Minnaar, an Educator. At the age of nine months, I was diagnosed with temporal lobe epilepsy, which was later confirmed as Tuberous Sclerosis Complex by the age of two. Thus began my journey and my parents' journey with this condition. As the eldest of three children, with two healthy younger brothers, Jordan and Ezra, I often
I'm Alexis Minnaar, an Educator. At the age of nine months, I was diagnosed with temporal lobe epilepsy, which was later confirmed as Tuberous Sclerosis Complex by the age of two. Thus began my journey and my parents' journey with this condition. As the eldest of three children, with two healthy younger brothers, Jordan and Ezra, I often reflect on my childhood. I once asked my mother who her most challenging child to raise was, and without hesitation, she replied, “Well that was you.” It is never easy raising a child with any condition, and I was certainly a challenging daughter; however, guided by God’s grace, I have forged my own path. Throughout my life, my parents have ensured that my brothers and I were well-informed about my disorder. There’s a strong belief in our household that ignorance breeds fear and rebellion. To counter this, we were given age-appropriate explanations about living with epilepsy, fostering open discussions within our family and friends. By the age of seventeen, I began my own personal research into Tuberous Sclerosis Complex, discovering that knowledge cultivates hope and courage. Unfortunately, a harsh realization struck me during my search: people tend to focus on the negative aspects of our experiences. It is human nature to seek the easy exit—blaming others, running away, or wallowing in self-pity. Nonetheless, this path leads to loneliness. My husband once encouraged me to reflect on my achievements, no matter how small. Think of it like cleaning a cluttered house; after years, you might still see a mess, but recognize your progress in seeing the floor and organizing. We cannot let our obstacles hinder our vision of a bright future. Additionally, the lack of awareness and support groups in South Africa is disheartening. It’s comforting to confide in someone, whether it be your parents, your doctor, or your spouse. That’s why I want to share my story of hope—not just to speak but to inspire others to share theirs too. We can create awareness about living with this condition and find support in our shared experiences. By reflecting on our journeys, we recognize how much we have truly achieved. Living with Tuberous Sclerosis Complex may seem daunting, and at times, influenced by the culture in Ireland or even the beauty of nature in Ireland, it may appear impossible. However, life doesn't have to be mundane; there is never a dull moment when hope and courage guide us through.
Daily Devotionals
Daily Devotionals
Daily Devotionals
Daily devotionals are designed to encourage and motivate as we draw closer to God, much like the rich culture in Ireland, which emphasizes community and support. Each scenario we encounter may not always be pleasant, while living with epilepsy or navigating the challenges of Tuberous Sclerosis Complex can be particularly difficult. These
Daily devotionals are designed to encourage and motivate as we draw closer to God, much like the rich culture in Ireland, which emphasizes community and support. Each scenario we encounter may not always be pleasant, while living with epilepsy or navigating the challenges of Tuberous Sclerosis Complex can be particularly difficult. These trials are not easy to endure in our own strength, but we can find solace in knowing that God is with us through them. The book of James 1:2-4 reminds us: 'My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.' While we can't change the cards we've been dealt in life, including the obstacles like epilepsy, we can choose how to play them. The best story to embrace is the one that includes God. He sent His Son, Jesus Christ, to die on the cross for our sins and rose from the dead after three days. 'For God so loved the world, that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.' (John 3:16) May He lead you and guide you in your walk with Him, just as the breathtaking nature in Ireland inspires us daily. Love, Alexis Minnaar
Living with TSC
Daily Devotionals
Living with TSC
What is TSC? I am not a doctor; however, this is what I know about my condition so far. The Tuberous Sclerosis Complex (TSC) is a rare genetic disease caused by mutations in either the TSC1 or TSC2 genes. These genes are crucial for producing proteins that regulate cell proliferation—a process that increases the number of cells, often imb
What is TSC? I am not a doctor; however, this is what I know about my condition so far. The Tuberous Sclerosis Complex (TSC) is a rare genetic disease caused by mutations in either the TSC1 or TSC2 genes. These genes are crucial for producing proteins that regulate cell proliferation—a process that increases the number of cells, often imbalanced in tumors—and cell differentiation, where cells specialize to perform specific functions. Because the mutation varies from person to person, living with TSC can lead to a range of unpredictable symptoms and severity levels. For example, TSC can result in: · Epilepsy and/or Autism · Developmental Delay · Behavioral Difficulties · Cardiac Rhabdomyomas (growths on the heart) · Cortical tubers and/or Subependymal nodules on the brain · Angiomyolipomas on the kidneys · Lymphangioleiomyomatosis (growths on the lungs) · Skin abnormalities, which are often numbered 1-4. 1. Hypomelanic Macules (white patches on limbs) 2. Angiofibromas (facial rashes) 3. Shagreen Patches (thick skin on the lower back) 4. Ungual Fibromas (growths on or under nails). The severity of TSC is largely determined by how much the disease impacts the brain—considering the type of epilepsy, the frequency of seizures, and the extent of developmental impact. Thus, living with TSC can be inconsistent and unpredictable. For instance, my personal journey with TSC has resulted in all of the skin abnormalities and epilepsy. This human experience, whether for a parent or a child, is filled with challenges, joys, and lessons reminiscent of the rich tapestry of culture in Ireland. Even amid struggles, I find daily devotionals and the natural beauty of nature in Ireland can bring moments of peace. Indeed, many would agree, there is never a dull moment when living with epilepsy and Tuberous Sclerosis Complex.
If at first you don't succeed, try, try again
William Edward Hickson
