Update on Mirabel's health

This post is to share the struggle and points of faith that we have regarding Mirabel's health concerns...

2 Corinthians 12:5-10

⁵... I will not boast about myself, except about my weaknesses. ⁶Even if I should choose to boast, I would not be a fool, because I would be speaking the truth. But I refrain, so no one will think more of me than is warranted by what I do or say. ⁷To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. ⁸Three times I pleaded with the Lord to take it away from me. ⁹But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. ¹⁰That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

On Tuesday 07/07/2009 we learned that Mirabel has a balanced translocation of Chromosomes 2 and 9, which most likely will affect her ability to carry a baby to term (because the baby could inherit an unbalanced transfer of genes and thus not be viable) AND we found out that she also has a "microdeletion" of 49 genes on Chromosome 6.

Of these 49 genes, one in particular is responsible for tumor supression. Now, luckily, Mirabel has one working copy of this gene... but if at some point in the natural course of cell generation there is a "glitch" she could develop cancer!

Regarding the other 48 genes: we are either not sure of their exact function, or believe that they can work properly with only one copy present...currently it is thought that the majority of the other missing genes are not likely to cause any significant problems by their absence.

But that small assurance may only be a temporary one though, as the test used to identify these missing genes has only been around for 2 or 3 years... which means that it may not yet be known what those genes do - rather than being certain that they mean nothing.

Because the test is so new, there are no documented exact cases of other people with the same microdeletion (or at least none that have been found yet). This means that we don't have any examples to look at to predict what impact any of this may have.

We also don't know what Mirabel's developmental capacity may be - which is a good & bad thing. It is good because we can and will expect that her present delays are only temporary setbacks rather than permanent disabilities. If she were profoundly or severely retarded, it would be obvious already - so it's good that we don't have that definitive answer...

The only bad part is just the uncertainty...

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Overall, Mirabel's continued progress and milestone achievements give us great hope because in almost all respects she seems to respond very well to therapy and is very interactive, and most importantly: she is happy.

It also helps us to know that the occurence of this "de novo" microdeletion is not anybody's fault, and was most likely not caused by any outside or environmental influences. It simply was God's plan.

And we believe that God's power will be displayed greatly in Mirabel's life.

Jesus looked at them and said, "With man this is impossible, but with God all things are possible." - Matthew 19:26 (NIV)

As her father - I absolutely anticipate that Mirabel will struggle through and overcome all of her challenges. I understand that the challenges may not disappear - but I believe that she will live a full and impactful life in spite of (or even because of) them! Her light will surely shine and change those around her in beautiful and unexpected ways.

• Why did this happen? To make Mirabel an example of God's love and power!

John 9:1-3

¹As he went along, he saw a man blind from birth. ²His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"³"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.

One of our greatest fears was that we would not be capable of meeting all of Mirabel's needs, but

... Acts 17:26 says "From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live." And that reassured us because if God plans out the details of our lives with such precision and care - we can be confident that he entrusted Mirabel to us because we're the perfect parents just for her! Romans 8:28 - And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

SO WHAT CAN YOU DO? KEEP US IN YOUR PRAYERS - SPECIFICALLY THAT MIRABEL'S DELAYS AND CHALLENGES WOULD ONLY BE TEMPORARY.

2 Corinthians 4:7-9, 16-18

⁷But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. ⁸We are hard pressed on every side, but not crushed; perplexed, but not in despair; ⁹persecuted, but not abandoned; struck down, but not destroyed.¹⁶Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.