January 2019 – What a month it has been!!!

My house is fast asleep while I sit here on the sofa to write… I have honestly missed writing, I don’t know about you but I feel tons better when I have penned down my thoughts. The new year started off excellent, I made a decision to be less of a procrastinator and try not to talk myself down on the days I feel a bit low! (we all go through good and bad days, its what we tell and do for ourselves that makes the difference)

My husband went on a week-long business trip as soon as school started after the winter holidays… It’s been a long time since I parented solo and I am very happy to say I did well! (claps for this mama) Honestly, it takes a village to raise kids and I have to say I am very blessed to have support around me.

This month has been an emotional rollercoaster, a test of strength and courage and a time to seek out the All Mighty in prayer and faith… It all happened on the 2nd weekend of the month when my sister in law called me late that night to say they were in the hospital because my niece (She is 9 years old) had become ill (she had thrown up a few times that evening, and late in the night when she was trying to throw up again she started frothing in the mouth and her speech was slightly slurred). I got a dreaded call at 4am on Friday morning that I needed to get to Dubai as soon as possible. The hospital that she was admitted into had done an MRI scan and they found some anomalies in the brain (at this moment in time my niece was displaying symptoms common to stroke – although we did not know then)

This is an excerpt from the Child Neurology Foundation website:

Most strokes in children present with the SUDDEN ONSET of neurologic problems. The sudden onset of neurologic symptoms should be considered stroke until proven otherwise, regardless of age. These are often focal neurological deficits – affecting one specific function. Common examples include:

Weakness of one side of the body (hemiparesis) – This is the most common presentation and may affect any combination of the face, arm, and leg.
Difficulty speaking – This includes problems generating speech (expressive dysphasia), understanding speech (receptive dysphasia), or decreased clarity of speech (dysarthria)
Vision abnormalities – Includes loss of vision on one side (hemianopsia) or in one eye (amaurosis) and double vision (diplopia)
Dizziness, trouble with balance or walking – unsteadiness, lack of coordination (ataxia), and abnormal sensations of movement (vertigo)
Numbness or altered sensation on one side of the body

After many worrisome and trying hours, the doctors did confirm that my niece suffered a mini-stroke. Thanks be to God that with the proper medication and quick thinking of her parents and the doctors at the ER she started to regain her sensation towards her left side of her face and arms, her speech continued to improve over the next few days and so did her balance as well as her eating and drinking. But we needed to get to the root of what/how/why did this happen and could it reoccur? After most of her blood tests and ECG came back normal the next was to schedule another MRA and MRI scan of her brain and spinal and for that she needed to be under general anaesthesia. On Sunday, January 20th, she went in for her scans… honestly the waiting and wondering does get restless!! She was in for almost an hour and a half. Once she was out of the MRI room, the nurse had called her mum over to wake her up. (this was by far the most daunting experience I have ever faced in my life, this little naughty girl was so fast asleep she just kept snoring and grunting us away!!)

On Tuesday morning her parents met with the initial doctors to discuss the MRI reports… They diagnosed and eventually confirmed that my 9-year-old niece has a rare progressive condition called “MoyaMoya” 

According to NORD (National Organization of Rare Disorders)

“Moyamoya disease is a progressive disorder that affects the blood vessels in the brain (cerebrovascular)
It is characterized by the narrowing (stenosis) and/or closing (occlusion) of the carotid artery inside the skull, a major artery that delivers blood to the brain. At the same time, tiny blood vessels at the base of the brain open up in an apparent attempt to supply blood to the brain distal to the blockage. These tiny vessels are the “moyamoya” vessels for which the disease was named.”
The NIH (National Institute of Neurological Disorders and Strokes)
says;
“The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.
The disease primarily affects children but it can also occur in adults. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body.”

This excerpt is from the Mayo Clinic Website on Symptoms;

“Moyamoya disease may occur at any age, though symptoms most commonly occur between 5 and 10 years of age in children and between 30 and 50 years of age in adults.
The first symptom of moyamoya disease is usually stroke or recurrent transient ischemic attacks (TIAs), especially in children. Adults may also experience these symptoms but more often experience bleeding in the brain (hemorrhagic stroke) from abnormal brain vessels.
Accompanying signs and symptoms of moyamoya disease related to reduced blood flow to the brain include:
Headache

Seizures
Weakness, numbness or paralysis in your face, arm or leg, typically on one side of your body
Visual disturbances
Difficulties with speaking or understanding others (aphasia)
Developmental delays
Involuntary movements
Cognitive decline
These symptoms can be triggered by exercise, crying, coughing, straining or fever.”

The exact cause of moyamoya disease is unknown. Moyamoya disease is more common in Japan, Korea and China, but it also occurs in other parts of the world.
Researchers believe the higher concentration of moyamoya disease in these Asian countries strongly suggests the disease may have genetic causes.

Risk factors
Though the cause of moyamoya disease is unknown, certain factors may increase your risk of having the condition, including:
Being of Asian descent. 
Having a family history of moyamoya disease. 
Having a certain medical condition. 
Being female. 
Being young.

As I write this we are busy getting second opinions and researching our best options for her to get the necessary treatment and procedures… We have found multiple doctors who specialize in research and treatment of MoyaMoya in USA, Japan, UK and India.

As it stands my niece has been affected on both sides of her brain and the doctors recommend two revascularization surgeries.

Our Lives have been turned upside down, to say the least, but we need to be strong, have faith and hope. For this beautiful girl of mine is the bravest and courageous child I have ever met! She gives us strength when we feel weak, her kind nature and innocence gives us hope, faith and courage to make sure she grows up to be able to accomplish and succeed in achieving all her dreams.

It was important for me to share what is happening in our lives, no matter how painful… It’s important to create awareness on this type of rare disorder that affects young children. I will, of course, update the blog next month when her course of treatment and recovery begins. 

If you are reading this, I humbly ask you to make a small pray to my niece as she and we fight for her battle to lead a prosperous life ahead and look forward to her brightest future.

Until then, I leave you with wonderful cherished memories of our month of January… we learnt to be supportive and strong for each other, we learnt who real family and friends are that stand by our side. We learnt family isn’t only your blood, but its the people in your life you are willing to help, to support, to care and to for better or worse to love and be loved!!!

xoxo