Wednesday, November 3, 2010

the epitome of strength

I sit here now, unable to put my thoughts into words that will suffice. In September, I wrote to you about a young lady, Ellia, who has been and is suffering from a very rare and painful genetic disease.

Ellia is just three years old.

My oldest sister is college friends to Ellia's parents and we've been talking a lot about it. I've been trying to keep up with Brett's (the dad) tweets and facebook notes, which give great insight to there current life situation. From what I've read, Ellia's illness reared its ugly head over a year ago and she has suffered from a few traumatic episodes of it since then.

Here is a quote from one of Brett's notes, but I highly recommend reading them for yourself:

"The genetic test on that gene came back today, and it showed that Ellia's 17th and 18th exons in her LIPN1 gene were deleted. This has shown to lead to acute, recurrent rhabdomyolysis. It's incredibly rare, but it's what she's got. It's a recessive disorder which means, apparently, that both Christina and I are carriers (extremely rare) which gave Ellia (and Olive, who will soon be tested herself) a 25% chance of having acute, recurrent rhabdomyolysis. It appears that the metabolic disorder is benign except when Ellia gets ill. There's something about her body's response to an illness (fever? virus?) that brings on acute rhabdomyolysis."

From what I've read, much of her episodes have included not being able to move her arms and legs, stand, walk, move. An inability to swallow or breath well. And an intense, severe pain has been something I read was amongst these times. No one, especially a tiny girl, should have to suffer through such moments. And I cannot imagine the God-given strength it must take for her parents to be there with her feeling helpless, unable to lift her burden. But from what I've read and heard, they are a young family of more than conquerors by God's mighty hand (Romans 8:36).

They have been to a specialist in Austin recently and found some wonderful information on her illness. Also from what I've read, there are only 20 known cases of this illness. This is extremely rare. They also have learned some more things through her pediatrician in Waco. Here are a few links for YOU to learn what is actually going on, not just listening to me blab like I know anything. :)

Brett's Tweets: Click here

Brett's Facebook notes: Click here

Brett's most current note: Click here

My heart is just broken for them, for her. I don't know the kind of strength it takes to deal with such things as this, but it is an encouragement to me to see someone so small, go through something so traumatic. And yet, be so strong and joyful throughout.

It makes my small, insignificant aches and life issues seem just that, small and purely insignificant! She reminds me that they are such things, and that I should be on hands and knees lifting this little darling up in prayer. Please join me by praying for Ellia and her family. For healing, for strength, for provision, for doctors with the knowledge to help them further, for her sister Olive to not be diagnosed with it.

Romans 8:37-39:
No, in all these things we are more than conquerors through him who loved us.
For I am convinced that neither death nor life, neither angels nor demons,
neither the present nor the future, nor any powers,
Neither height nor depth, nor anything else in all creation,
will be able to separate us from the love of God that is in Christ Jesus our Lord.

No comments: