There are moments in life when you know that no matter what is said next you will never remember. Because what was said previously is so heart wrenching that your brain graciously begins to shut down a fog builds around your mind and heart to protect you from what is to come. I have had few moments like that so far in my life and while I know that it will most likely happen again my fervent prayer is that a protective bubble will form around those in my life who share my heart.
Huntington's Disease.
Less than a week ago I had no idea what it was. Interesting how in the matter of a few days I have soaked up all the information I can get my hands on. What is it? What does it do? Why does it do it? What can be done to prevent it or cure it?
Oh.
...that's not good. To put it simply it's unspeakable.
Rachel is 27 years old. Which causes me some confusion... well, not that she's 27, but what that means in terms of HD (I will abbreviate Huntington's Disease as HD from now on because I'm lazy like that). From what I've read Adult-onset HD is usually discovered around mid-age. The U of I defines mid-age as 30s and 40s. For those who are diagnosed at an early age it seems as though the symptoms are much more aggressive and horrific. So 27? Mid-age? Never hoped so until now.
HD is defined as a disorder passed down through families in which certain nerve cells in the brain waste away, or degenerate. (source University of Iowa website).
According to Mayo Clinic:
Early signs and symptoms of Huntington's disease often include:
Personality changes, such as irritability, anger, depression or a loss of interest
Decreased cognitive abilities, such as difficulty making decisions, learning new information, answering questions and remembering important information
Mild balance problems
Clumsiness
Involuntary facial movements, such as grimacing
Later signs and symptoms of Huntington's disease can include:
Sudden jerky, involuntary movements (chorea) throughout your body
Severe problems with balance and coordination
Jerky, rapid eye movements
Hesitant, halting or slurred speech
Swallowing problems
Dementia
Young people who develop Huntington's disease may have signs and symptoms that mimic Parkinson's disease:
Muscle rigidity
Tremors
Slow movements
So now that I have a better grasp on symptoms I begin to wonder what causes this and quickly learn that it's a genetic disease that messes with proteins in the brain ... whatever that means. In short Rachel's mom, grandma and great-grandma all had/have it. You see there's a 50% chance that you'll pass the gene on to your child... and so Rachel has made the choice to never have children biologically. Heart breaking. As if the diagonoses wasn't enough.
Currently there is no cure for Huntington's. I believe that Rachel called it "a death sentence"...
There are a few treatments that help with the symptoms and she will begin a few in January. One side effect is vomitting and will cause her to rapidly lose weight... which of course can cause other health issues.
Before she left for home last night we were able to circle around her, lay hands on her and cry out to God who is able... more than able... to do much more... so much more... than we can ever imagine or hope or dream ...
And so for those who read this I ask that you would pray not only for healing, for a cure, but for grace and strength and for His mercies to be made new every morning. That she might know that Jesus is Savior, Healer and Sustainer and that for as long as He gives her life that she might glorify His holy name.
So I leave you with this favorite hymn:
It Is Well With My Soul
When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life,
Thou wilt whisper Thy peace to my soul.
But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
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