Loving Lumina: Family & Health Update | Actifit: Mar 4 2019
Lumina update:
Today her seizure activity has reduced significantly. However she does have a runny nose now and she is Not Happy About It.
It is really a reminder that Luminas seizures disturb us more than her on this level. Of course they are still not good. Yet there is some comfort in knowing a runny nose, a common experience for all people, is more bothersome for her.
What's Walker Warburg Syndrome?
Lumina has Walker Warburg Syndrome, a rare congenital muscular dystrophy. If you Google Lumina's disorder, you may feel sad. While her condition is serious on paper, it just can't tell the whole story.
Lumina is a spunky three year old who loves to play, music, her family, and so many other things. She is really up for almost anything, she even braved the snow this year (but she will pass on that thank you). Lumina can communicate very well using yes or no questions, choice cards and her facial expressions. If you put in the effort, you can have a whole conversation with her. Of course, Lumina has so many limitations, but it does not frustrate her.
She is good-natured and content most of the time, even when she is struggling with more difficult aspects of her health, namely, seizures. Right now, she is struggling a lot so in turn, we struggle as a family too. Take a moment today to think a good or prayerful thought for someone you know that's rare and beautiful today!
Height185 cm |  | Weight93 kg |  | Body Fat18 % |  |
Waist103 cm |  | Thighs59 cm |  | Chest109 cm |  |
Nice count and thanks for filling us in on the Walker Warburg syndrome.
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My wife wrote these words, but I thought it was important stuff, particularly since Feb 28 was "Rare Disease day". :)
Yes it was important thanks for posting it.
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