Our Updates

  1 Corinthians 10:13-There hath no temptation taken you but such is common to man: but God is faithful and will not suffer you to become tempted above that ye are able:but will with the temptation also make a way to escape, that ye may be able to bear it.

   NEW Genes and mutations being found!

We have been misdiagnosed, mis- informed, mis-managed and just seem to have another peice of news and many things that no one understands. This is the start of our story and we pray it won't be the end of our story. Our kids each day we see their faces are walking miracles as badly the care has been and no matter where you go, you take a chance of being nothing more than a test, a scientific paper.  

There are major reasons for us to be jumping for joy! Our son is still not well and but he is much better than he was. We still do not know why he can't gain weight or maintain it without such suppliments but he is here. he and Samuel and even Grace for a time had stomach issues. This was explained away by pancreatic insuficiency, a lack of the enzyme that breaks down fat and if you can't absorb fat, you think how great,. never to worry of weight but fat is needed for so many reasons.

It blows my mind that as many things that can go wrong with a body and how intricate our bodies are, how can one possibly believe we evolved from an ape? If we did than why are there still apes and why do we not see them evolving? I think it takes more faith to believe in that than to believe in Christ but you don't know Him through the mind but instead through a relationship.  

There is one new genes on the horizon that makes me excited to learn about. Chris and I both have long studied a ton of material, read all kinds of medical data and thank goodness for the internet. We once came upon Glogogen storage disease and thought, our kids fit almost as well her as in Shwachman-Daimond, question is, do they have the gene? They were often thought to have Fanconi's Anemia, there are new genes there as well. There are 13 new genes from the neutropenia studies and FA has more than that as well as a Fanconi Anemia Like as there is a Shwachman_diaomd like that I find along with many to be strange. Germany isn't the only ones with knowledge and we know we must seek out all of the possibilities.

Gee, there are over 200 Primary Immune diseases! Our family still doesn't know what of those is our called or is it more about the combination of 3 rare diseases, Multicystic Kidney Disease has a new twist on it now. How can we believe our daughter to have four rare diseases? No I don't buy that anymore and I don't think anyone would. I believe it is all ONE disease connected together buy one Gene with many mutations.

Later, at meetings and conferences but mostly from other parents with sick kids, without a firm diagnosis or a box that just didn't feel right, I wondered, could all of these be somehow connected. Down the road, would they find that the cheif reason we had to go on, Neutropenia and Chemotaxis, be all from one gene with many mutations? Or at least a few genes with many mutations. We know only this much, our kids will be tested for a lot. We know they have around 24,000 mutations and this is the best news we could hope for. It means that instead of believeing my daughter has a rare disease called Multicystick Kidney Dyslasia, with now another rare problem connected to her kidney and she had severe neutropenia while samuel has Moderate to severe and Jake had Mild to moderate and they all have Chemotasis(which means they don't move right, this I do believe and sometimes the boys would be neutropenic and sometimes they wouldn't, though samuel most the time. On top of that they had severe immune dysfunction, a Primary Immune Defiency Disease that maybe, it was ALL REALLY CONNECTED!!!!

 Yes, this past through our minds a millions times. You just do well to get through the day, to make sure you stay off of Medicaid where they cut back and out expensive transplants and give them only to the ones with a real shot in their minds anyway. That is why we have asked and begged God to give us some help to save these lives, no, they aren't more important than another nor are they less. They did not pick to have this, no one told us we had a rare gene that would pass onto our three children after countless hospitals and doctors. Yet, plenty of judgment can come when people think you had children knowing they were sick and so you should take your spot in poverty and stop working for the lives of your children.

We have been battered and buised but we have been loved and blessed by far more than the negitive. We choose to believe that science and God will catch up to us and our kids WILL be cured, we believe that! If we did not think that were possible, we would have thrown in the hat a long time back cause it isn't an easy road to be on.

Often begging for help so you can provide care the best with choices so you can change when a doctor isn't doing anything or there is a better treatment somewhere else.

Our kids have moved so many time and trust me, we have had their belongings away from them in storage more than with them. That makes a parent feel like crap. We can't give them the things that kids want. They don't even ask for the most part.

They lived a Life before we had everything taken and now we still work on living a great life, just without all the things we had.  We were on a lake, had a boat and could swim. A horse barn in the back and a swing set with a trampoline, now all boxed up and they will be grown by the time they can use them. that was great but God had other plans. We can't lie and say being poor is wonderful, we miss our HOME the most and our freinds, our lives since we were both young always lived there, since kindergarden.  When we found out all three were sick, we said thats it, we head to a peice of my roots, a piece of land, put up a mobile home, a above ground pool and fish, camp and hunt. The things they like to do. If for some reason, they were unable to be healed, we could offer them their own trailer, their own place but us close by. In this country, you better stay off medicaid to do so.

My husband has suffered rejection time and again and we can't help but wonder if what we know can be done by the click of a computer, maybe the are avoided us. In several cases, they are. they see his name and within a day, they write back and say he is not quilified, to qualified. It's clear, the word spread and out of what was concern by many of the workers, turned into discrimination that we have no way to prove.

 If anyone has a better answer for what we should do, we are open to hear all ideas, my husbands number is on the front page. All he wants is to work hard and make Christ proud and have good medical benefits that won't cost us half his paycheck. All the know him in Kansas City, can't say anything but good for they came looking for him. It wasn't until those four words Genetic Bone Marrow Failure that caused everything to change.

Right now, we wait until this doctor in Germany maybe able to help us. Maybe he can't or won't. We pray daily for so many things but above all for us to offer our kids happiness and we feel like we are failing. Constant worry of money and bills linger. Job security linger and all we can do is pray.

We are so grateful for the job he will start in two weeks, tutoring and teaching which he loved to do and would be great at it. We hope having a job will open more doors. He is smart as a whip, 4.0 without studing much at all, carring two jobs much of the time. He will make it, for God knows our need.

Try to make them laugh everyday, be grateful for all we do have and hope we can offer them a home oneday, free of fear of losing it. A place to hold onto hope and to gladly work for it. My husband is working as hard as he can to do just that and each day we wake knowing how fortunate we are to have these kids with us another day.

Please pray that our dreams so big and so small came true. There is no place like home and for parents providing a better life than the one you have should be at the top of the list! It is for us. All we want is their happiness and to stay on God's path. I know God has a plan for them. I can't wait to see where he takes them.

The Lord is my strength and song, and he is become my salvation! 

Just continue to lift Jake, Samuel and myself up as we are all very sick. Pray for Chris as he has been ill and is worn down from all the work being left mostly on him. Grace is so far better and we pray she stays that way. It is hard on all of them, moving and being so ill. They and I are so tired and we know having so much stress and dealing with the house move has caused us to not be able to fully take care of ourselves. So we look forward to getting better. We may need to take them to Ohio and would have it it wasn't for this going on.  We are working hard to just get the school work they MUST do done each day and this has been very hard.

We have praises to report as we have a place to stay!

We want to take a moment to thank all those prayer warriors, brothers and sisters in Him for their love for us. So many who write to encourage and uplift without ever growing tired of our numerous never ending needs. You are the greatest gifts we ever recieve besides His Love. You seek Him out and the words He gives you help in so many ways. We feel those prayers and we need those who are mature in their walk to understand that we have faith and are broken before Him. 

In Him, Vickie, Chris, Jake, Grace and Samuel

If enemy is hungry, give him bread to eat, and if he is thirsty, give him water to drink. for you will heap burning coals on his head, and the Lord will reward you for it. Proverbs 26:21-22

The Cox family