Neurofibromatosis- What A superhero REALLY looks like
Neurofibromatosis- What A superhero REALLY looks like
See this cute little five- year-old face? It belongs to my niece T.
She is cuddly and giggly. Her imagination is fantastic and she loves to swim and take horseback riding lessons. She adores animals of all kinds, and holding her hand is a dimply little slice of heaven.
T has a serious disease called Neurofibromatosis Type 2 (NF2), affecting approx. 1 in 33,000 people.
Tumors grow on, or alongside, her spine and nervous system. You can read about it here (please do).
It is so easy for our eyes to scan over things, unable to comprehend the unfamiliar words. The noise of the world disabling our ability to stop and see the face behind the story.
This is her family.
The tumors that this precious girl has suffered through?
What are Neurofibromatosis type 2 realities?
Here is a sampling of the harder details of this child’s world:
- She has had two eye surgeries to remove tumors by her optic nerve
- One eye muscle surgery to try and correct her eye from going outward due to tumor
- The tumor is still there
- Hours and hours in surgery, yet, the surgeon has been unable to get it out
- One major brain surgery to remove a tumor pushing on her brain stem. That was especially traumatic for her parents, I mean honestly, that tiny body?
- She has had many complications and could have had more
- In the beginning, when she was 2 and they first discovered the NF2, she had MRI’s every 2 months. Last year they changed it to every 6 months.
- She has to be put under anesthesia… every time
- She has specialist appointments every month with SIX doctors
Only two doctors, one all the way across the country in Boston, knows about Neurofibromatosis 2. This is expensive and incomprehensibly trying for my sister and her husband.
Yet, they selflessly do what needs to be done.
And this day? It was T’s day. And she had her family behind her. It is pretty clear how delighted she is about that!
What Is Neurofibromatosis?
Neurofibromatosis (NF) is a genetic disorder that causes tumors to develop in the brain, spinal cord, and nerves. The condition occurs as a result of a gene abnormality. There are two types of NF, both of which cause tumor growth in various areas of the body.
Neurofibromatosis type 1 (NF1) is more common than neurofibromatosis type 2 (NF2). NF1 causes tumors to form in various tissues and organs of the body. This causes skin problems and bone deformities. NF2, on the other hand, causes tumors to develop on the brain and spinal nerves. Although most tumors caused by NF are not cancerous, they can still be dangerous and impair your quality of life.
NF2 and Tumors
NF2 causes noncancerous tumors to grow on nerves in the brain and spinal cord. Unlike NF1, NF2 usually doesn’t present any visible symptoms and is rare in children. The tumors caused by NF2 are usually on the eighth cranial nerve, which connects your inner ear to your brain. These tumors are called acoustic neuromas. They can cause hearing loss and problems with balance.
Schwannomas are another type of tumor that can occur in people with NF2. These tumors originate from Schwann cells, which protect your nerve cells and neurotransmitters. Spinal cord schwannomas are common in those with NF2. If left untreated, they can cause paralysis.–healthline.com
This is T’s team. Her supporters. My sister’s supporters. My BIL’s supporters. T’s big sister, my precious older niece.
This network of people stand in the gap alongside them. I am so grateful. This is the first year I could come and be part of this network.
So, you wonder what a superhero REALLY looks like? She is five years old and has blond hair, and sometimes wears a blue bandana. She is super T. My littlest hero.
And a really, really close second? Her parents. R and AJ.
They would so appreciate you spreading the word about NF2. What it is; why awareness matters so much.
