alexis-writes.com

Never living a dull moment.

My Background

Daily Devotionals

I'm Alexis Minnaar, I work as an Educator for all stages (or grades) and in many subjects. At the age of nine months, I was diagnosed with temporal lobe epilepsy, which was followed by a confirmation diagnosis of the Tuberous Sclerosis Complex, at the age of two. Thus my journey, as well as my parent's journey with the condition began. I

I once asked my mother, who her most difficult child was to raise. Instantly she answered, “Well that was you.” It is never easy raising a child with a condition of any sort. I was an immensely challenging daughter to bring up, however, through God’s grace and guidance – this is my story.

Ever since I can remember, my parents have always been incredibly informative with regard to my condition. Neither my brothers nor I, have been left in the dark with regards to my disorder. A strong belief dwells within our house, that not knowing leads to fear and often rebellion. Consequently, age-appropriate explanations have always been given to us, (along with our family, and friends) as we grew up. By the age of seventeen, I began to do my own personal research. As time passed, I found that hope and courage grew along with the knowledge I gained.

Unfortunately, a cruel realisationoccurred to me as I searched; firstly it is easy for people to see and dwell on the negative experiences that we go through. It is in our nature to take the easy way out; blaming other people, running away, or even feeling sorry for ourselves. However, this leads to a very lonely and difficult journey.

My husband once said; "Sit down and think of all the things you have accomplished in your life, even if they are small." Think of it this way; you are sitting in a house, which is cluttered to the ceiling. You begin to clean it, and after ten years the house is still a mess. Look at what you have accomplished. You can see the floor, your clothes are in the cupboard, and you can use the bathroom. We cannot allow our hindrances to stop us from seeing a future.

Secondly, there are no awareness or support groups to confide in, in South Africa. News such as this is disheartening. It is always pleasant to confide in someone, whether it is your parents, your doctor, or your husband.

Therefore I wish to share my story of hope with you. In the hopes that you would find the strength to share yours too. Creating awareness, as well as finding support within each other's experiences. By reflecting on our experiences we thus realise how much we have truly accomplished throughout our journeys. Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't have to be... There is never a dull moment when you have hope and courage to guide you.

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Daily Devotionals

Daily Devotionals are intended to be encouraging, motivating, drawing you closer to God. Each scenario we may find ourselves in may not always be pleasant. Difficulties and trials are not easy to pass through in our own strength, but God is with us through them. In the book of James 1:2-4, it is written:

2. 'My brethren, count it all joy w

2. 'My brethren, count it all joy when you fall into various trials,

3. knowing that the testing of your faith produces patience.

4. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.'

We can't change the cards we are dealt in life. We can merely choose how to play them. The best story, is the story with God. He sent his Son Jesus Christ, to die on the cross for our sins, Who then raised from death 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.

Love

Alexis Minnaar

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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...

What is TSC?

I am not a doctor, however, this is what I know about my condition so far...

The Tuberous Sclerosis Complex is a rare genetic disease. TSC is caused by the mutation of either of two genes, TSC1 or TSC2. These genes are the code for proteins. Proteins that regulate cell proliferation (Cell proliferation is the process that increases the number of cells, and is defined by the balance between cell divisions and cell loss through cell death or differentiation. Cell proliferation is increased in tumours.) Cell differentiation (The process by which a cell becomes specialized to perform a specific function, as in the case of a liver cell, a blood cell, or a neuron. There are more than 250 general types of cells in the human body.)

Because the mutation is unique to each individual, the disease is unpredictable, therefore causing many symptoms, along with levels of severity. For example, TSC can cause;

· Epilepsy and/or Autism

· Developmental Delay

· Behavioural 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)

· Abnormalities on the skin; numbered 1-4.

1. Hypomelanic Macules (white patches, which form on the limbs of the person)

2. Angiofibromas (a facial rash)

3. Shagreen Patches (a thick skin on the lower back)

4. Ungual Fibromas (growths on or under the finger and toe nails.

The level of severity of someone with TSC is determined by the amount the disease affects the brain. For instance, the type of epilepsy that is caused by the disease, how many seizures a day the person has, whether a person possesses epilepsy or autism, and lastly to what extent the disease has impacted their development. Thus making the disease inconstant and unpredictable.

In my case for example; the severity of my disease has left me with all the skin abnormalities and epilepsy. Therefore, I can state with complete confidence, that in a life with TSC for either a parent or child... There is never a dull moment.

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