THE COX KIDS HOMEPAGE

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                             Cox Kids Homepage

 

Until we can make other arrangments, anyone who would like to make contributions to help, can send them directly to us.  This will not be tax deductible, however I am looking into setting up a trust fund at our bank. Freezin for a Reason is scheduled to happen as always and were thankful for this each New Year's Day. Christopher Cox and family

Our home address is 160 Sandsridge Way, Waynesville, NC. 28785 

We are not sure how ObamaCare will effect our family as it's state to state and honestly, private insurance has been the best which isn't saying much. Short term illnesses or a lighter diagnosis impacts families differently. There was a time that once you became 20 years of age, Medicare picked up such diseases but that is no longer the case. At the point past 26, and we pray our children live but not struggle in pain or illness to the point the quality of life, we know their His. Yet, unless it's Kidney Failure, our kids can only quailfy for Medicaid and were trying to find out about SSI benefits. This is state to stae as well and since the governement shut downs and no one, not even the groups we know about, seem to pridict what impact this will have and thus, getting assistance is a major shore that we are undertaking. Basically, as it looks, we know one is too sick to really work but we have hope that that changes. Thinking of careers they maybe able to do from home, is something we want them to be prepared for, still encouraging a normal life and their dreams.

It's difficult as the diagnosis have shown that some of the inheriated bone marrow failure diseases have cross clones(genes) and it becomes really difficult when for example, the German doctor found 40K mutation for SDS and knowing that is true for SDS, it certainly can be so for Fanconi's Anemia as monosomy 7 is a clone shared by both. The treatments and research has changed as well but it seems not for the better. It's very frustrating and were in it times three plus my own health not the greatest. We know we may always be responisble for taking care of them but I gave them to God and He can do amazing things in a person's life if they chose. We still have samuel at age 11 and then we face new issues with needing a doctor(Bone Marrow failure doctor who really should be in charge of everything else but it doesn't work that way for insurance companies) Since in the past, these children generally didn't live too far past their 20"s but now some are living lives well into their late 40"s and always hope that treatments and of course a cure or what I believe God can simply heal them, we have new challenges.

Since, most who suffer from an Inheriated bone marrow failure disease and many things go along with that such as their immune system and the great improvement of IGG expecially as we are trying to improve their lives by being in the world. When your sick with a contagious bug(C-Diff) that effected the primary care giver(mom) made it much harder on all of us. Thank God that we found the doctor in New York, for we have beaten that and while Jake always had some other problems we knew with his GI tract. He is on a feeding tube and insurance doesn't pay well on genetic testing. We really need someone to do something about this but right now, our challenges are great and we struggle with regular family issues as well. We need Faith to be strong and prayers go a very long way for us and so many dear freinds and family have been here for us, never letting us done. I know that God has us in His hands and as a parent must watch their children struggle, I can only pray that they relay on their own faith and only want to help them as much as possible. They are amazing to have been through all of this and I marvel at their resealiance. 

 

 

 We give thanks to all that care enough to even visit this page and we are blessed in many way. Thanks everyone, The Cox Family.

Going across the country when I finally knew what I thought I knew years before, that all three had this terriable disease. The disease research is just that, research which means, they haven't a clue of what is really best for the disease and it has changed since the beginning when I started to study all the labs and then the internet with groups of other parents, sometimes, even patients trying to find out where and what to do.

I started out with a Neutropenic daughter born barley after I was on an IV for five months of my pregnancy only to learn that she had cysts where her right kidney was to be. Then, I Know God blessed us for I lost so much weight and then, I was pretty small to start with. Those, little blood counts and illnesses that reminded me of my oldest son, Jake who I took all over the city only to be told, he was born premature and that he would grow out of it all. Deep down, I mother just knows when something isn't right. I wasn't new to babies and had been a very active aunt to my neices and nephews and knew my babies weren't the same. Still, you want your child to be fine so you listen. Then when Grace was four, I found that we were going to be blessed with Samuel and I was so happy. During my year's of research, I had studied on what Mayo had told us our daughter had but attended meetings in Chicago and later Seatlle and Maine only to find that Samuel, who we saved stem cells from, had neutropenia as well. I made them do his blood work and wouldn't allow vaccinations as I had read that this could cause Autoimmune neutropenia which there isn't any way you can have two children struck with this, little lone three. Jake was always brushed off, though he had the worst GI isues and was Failure to thrive. They have caffe a latte spots and chemotaxisis( when the neutrophills don't travel to the site, meaning, they are just as open to infection as Grace who had severe neutropenia, below 500. So, learning at birth his counts were low, I was assured that this can happen but when the doctor called asking for our hemotologist name and number for Grace, I knew, right then and there, all three had an Inheriated Bone Marrow failure disease and at that time, it meant certain death early. Yet, neupogen had just been on the treatment options for a short time, it and the IGG would be life savers.

 

When we first learned of the neutropenia and anemia, the doctors did mention these odd names, and I would start to research them. Finally I wound up in a group of mostly mother's who were all like me, with kids one some maybe two but none three, that had similar problems but no one knew for sure what it was. Some of these parents were doctors who had children and we would meet them at confences all over. I studied and found that taking them to all these different places was a must and we decided after Chris came to know Christ that we would live our lives to the fullest and try to be as normal as possible.

 

Sadly, live happens and after years in gymnastics and havinf TMJ as well as bad neck/headaches, I had a severe car accident that didn't leave it's marks until about 6 months later when my pain began to worsen. My father had similair issues and I see his doctor in Charlotte now. My spine and bones/joints are just a mess and the pain couldn't stand in my way. I was a full time caregiver, mother, taking care of three kids that we had been told would die without a transplant and is the entire reason we ended up at Duke, only to find that somehow, our prayers were answered, our daughter wouldn't need what at that time we thought would cure our kids but at the last moment, we would end up at Cincinnati where we would learn she would have died. Yet, we were still between the two and Chris was in Charlotte stuck with a job, leaving our friends,m family, home, and church behind. Though we didn't know why, over the coming years, we would have a wonderful doctor close by but our lives were changing.

Kids start to grow up and start realizing what they have, all their issues and that no one really cares in the healthcare feild. Putting them into a box, naming it gave comfort to us but now, I completely don't think they have Shwachman-Diamond Syndrome as Grace's recent discoveries, which shows how easy it is to miss what they don't look for, even though I knew it was a possibility and asked for them to check, it didn't happen. Now, with all I know from years of research, I believe they have Fanconi's Anemia of which they just discovered over 40K different genes on SDS and are discovering the same with all these Inheriated Bone Marrow failure syndromes and depending on where or who you talk to, makes the difference.

That is just the tip of the ice berg, for we would suffer three long years of my being ill along with unempolyment and under employment, changes in what our kids wanted us to say as it effects every part of there social life which lent jake and I to none, isolated from the others and they became isoalted. Chris did the best any man could possibly do. We are far from perfect and we have found that all we want now, is to make our kids comfortable, happy as possible and try to push forward. We walked away from everyTHING but we still have our children. There comes a point, when I was so sick that you do begin to see the line between living a life or living an illness that leads no where but to more pain and illness, death. We have crossed so many lines, some Jake and I discovered and we drew closer to the Lord but it also put a block to what a husband and wife are mant to share. What you kids are meant to share with others and the fact is, you desire familiar sprinkles of memories. Those times where we lived life to the fullest, for us, living on a lake, boating, horseback riding and of course, wanting to eventually have land and shoot guns, fish and hunt. You don't have to be rich to create memories. You walk away from your faith and Satan will be there to tempt you in every area and sometimes, you slip and fall but thats what love is about, helping another stand back up and we have helped others bvut have been triple fold in payment with the generosity of others. Those who can't imagine having so much on one family. I have certainly had my own time, where I question why so much, Lord but never has He left me alone. We are thankful for our family and friends who have stood by us through thick and then and honestly, it's been a rough road on our own. There is nothing like those who have known you from childhood, who get everything about you and still, stand there with you. Nothing like real family and we just want to be where God can make some of our small dreams come true. We want most of all, for our children to be cured. We want the best care but not in place of the best over all care, meaning their emotionally, spiritual and physically well being.

 

Please, don't give up on my kids or our family. Prayer and thoughts go a long way. Thank you all who continue to care for our kids, even when we have our own issues. Trust me, as the mother who gave birth and none were easy, nursed these babies and took them all over and then when I coulodn't, my husband stepped up and did it all, we both love our children and one another just as much as anyone of you love yours. We want to give them a home, an education and great healthcare but most of all, a stable home filled with a safe loving family sticking together against the harshness of the world and against the normal trials all families endure. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Updates: Our family has been to hospitals and will be receiving more care which means travel and expenses and time away from home. We really don't know where or how we will meet all the bills and co-pays which are extremly high. To see a specialist, which is about all they see, is $70.00 times three, we may see up to four in one day. That adds up fast. Then the medications on top of that, the co-pays on some are $64.00 per Rx, some less. Sadly, my bout with C-Diff and exposure to the kids that I have been exposed to has caused my own health issues. I am so thankful that we found the doctor in New york who curred Jake and I of this awful disease. Being down for three years, causing my back issues to worsen and a positive titer on Lupus isn't too unusual as I the primary cargiver, to develop some heath issues.   

 

 

 

He has been sick far too long. Yet, he knows the Lord and he is half way there. he still needs help as no one could go through a long term bed ridden experience and come out to find that his marrow is failing and if we don't get him to the places that are willing to help us with all three,isn't easy for anyone, much less a nineteen year old.  Samuel's marrow was also bad. He has diarreha everyday and also has some of the Bone Marrow Failure disease that has caused us to except that autism and learning disbalities are there and pursue the suggested help. 

 

 

 

Our desire is to come home to family, friends, our church and lake Winnebago where we have lifetime friends and new friends. I strong support group. this was an offer made by our church to help us but it meant no health insurance and we get the help I need. simply cannot abandon that. If Chris finds a job with life insurance we will be home.  

 

Samuel mrrow was a shock to us and all we can hope for is the sample may have been bad, though it was reported good. He is bored and without money, you can't do much to have fun. Gas to go anywhere costs, food costs, eating out costs and we simply do not have it. My pareyer is my health will improve and I can attend school and work to help my family. This will not happen until my heath is solved but I plan to work sick or not. I have to try. 

 

The fact that people believe that there is all this help from the government or state has not proven to be correct. The help we had has been cut and we expect further cuts. 

 

We do fear returning home will cost more in travel expences and we have been told that its time to give up and just allow Jake to die because we don't have the money to help him. This is hard for I KNOW that Jake has a gift and there is help. We have several doctors who are looking into his case and our other two. They do not thing SDS is the disease but it is clear, they have more than just Inheriated Bone Marrow disease and need to explore their immune system. They recieve IGG infusions weekly and we are thankful their is a medication that help our children FEEL better but the cost is high. The neupogen injections were cut back due to cost and so the three must share. Their neutophils don't work as they have Chemotaxis, meaning the whilte blood cells that destroy life- threating bacteria makes them open for everything. 

 We are thankful everyday that we have made it. There was a time, we could have fun and enjoyed life. We are working on that but it is nearly impossible for us to do. Please pray that for my husband because this man has taken for too many hits when he reached out for spiritual guidence.  Yet, we plan to hold close to Christ and no, He sees the heart of everyone and their intentions. We have enough to deal with just ihn the illness and my husband is my soul mate, one in Christ and we will be fine but not without the help and prayer of others.

 

 

 

 

 

We have always put our faith in God but we made a huge mistake, he put them in ours hands and we know places to go but we have to choose wisley. Sorry I will erase and update soon but I am wiped out. God Bless you all and we love you all.

I have seen things and realise who the people in our lives really are and who deeply cares. It is hard to explain how awful it is to have your child come to you with awful pain all over. His hands and feet tingling and ice cold. His stomach in knots, Constant nasua and vomiting after forcing himself to eat. Watching your child suffer to the point of mental breakdown and it isn't nor has any of it been his control but all due to vital nutrients that we all take for granted. This family has been to the best and found that trying as hard as we can to keep of medications and chemicals and going natural as much as possible is the way God intended. Obvouisly, we can't cut out the IGG which is given through an IV or Sub Q and is all that was helping him. Then he became so thin that we couldn't even put the needles in as there isn't any fat and hard bumps remain that way now. We plan to start him on IVIG and get the treatments he needs. We need to find the right place for all three kids and we pray for a better finicial situation. the amount of money it takes to buy medication and probiotics and now all the shots of many vit. will only add to the long list. We thank Christ for those who help and have always helped.  God will bless them and we thank Him for giving us a glimer of hope to end Jake's ordeal. We may have to feed through the G-Tube and medications through a port. It breaks our hearts to know how sick he was and medications could not help. Through it all, considering the length, I know that our son is one of the strongest people and his will to survive surpasses all understanding if not for the fact that he belongs to Jesus. http://www.b-12shot.net/b12-deficiency-symptoms/

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                     6th Annual Freezin For A Reason, Winnebago Wizzards true heros's. Each year, our home town supports our family through a very frezzin way! They ski in frigid temps of the Midwest Missouri Temps. Many gather, friends, church, family and they work so hard, give of time, food, prayer, money and love. This year's was a tremendous blessing and we thank with all our hearts every person who reaches out to help our family. We are constantly blown away by the love we feel. You all are helping to save our family! How can we express in words alone, what we feel. How can we repay, we cannot. We can share with you our deep commitment to faith. We have seen what it can do. We can pray this, that each of you are blessed back by His love and please know, we are here for anyone and just because we may need, doesn't give us an excuse to only take. We are here to listen, to do anything we can and most of all to love. God knows the heart and therfore, we can't fool Him.  In the Bible their are two very different scripures: Dear Lake Winnebago and friends, these scriptures just came to me as I was reading oneday. I remember an older women years ago, who gave a lot to her at Lake Winnebago spaghetti dinner. She didn't really have it to give but she did and sent a letter telling me she wish it could be more and her prayers were with us. I feel the scripture below fits her well. It also holds true to even us, when we have been down, not helping another in need, doesn't excuse us. He expects all to give. It speads and soon others joined in from surrounding towns and news of old friends surfaced. The pure joy of helping begins to grow on some, other's always had it there. This is a story so deep and touching that we want others to hear of it. Most of all we thank God that He has allowed such blessings upon us. Our road is long and we face bills and illnesses we do not know how to battle but we know we have a group of amazing people who are battling it with us. Thank You, seems so small but it's all we can offer for now.

 Luke  21:1] As he looked up, Jesus saw the rich putting their gifts into the temple treasury. [2] He also saw a poor widow put in two very small copper coins. [3] "I tell you the truth," he said, "this poor widow has put in more than all the others. [4] All these people gave their gifts out of their wealth; but she out of her poverty put in all she had to live on."

This scripture may fit some at Winnebago and friends, we do not know, we do know that God knows the heart of everyman and we know, that so many of you will be blessed when standing before Him.  No matter what you believe, your lives will be blessed. Please, if their are any prayers we can give for any of you, we really want to know. Thank all of you.

1 John 3:17 But if someone who is supposed to be a Christian has money enough to live well, and sees a brother in need, and won't help him--how can God's love be within him ? 1 John 3:18 Little children, let us stop just saying we love people; let us really love them, and show it by our actions. 1 John 3:19 Then we will know for sure, by our actions, that we are on God's side, and our consciences will be clear, even when we stand before the Lord.

 

Grace, Sam, Jake, Vickie and Chris at Camp Sunshine Maine

Feel free to contact us  via songofsolomon867@yahoo.com. @yahoo.com  please know we recieve and try hard to keep up on the e-mails but sometimes we may miss a few, forgive us and keep trying.  Our family can be reached at 816-694-1040 or 816-522-5677 We welcome gifts and go through either Rich Lapetria at816-213-3037 for Freezin For a Reason. http://lakewinnebago.org/ or facebook https://www.facebook.com/#!/group.php?gid=53106666027.  Lake Winnebago Wizards

Our needs are tremendous and we have been blessed in so many ways. Yet we still are in need of some unanswered prayers. We are working hard to find the answers and ask prayer for those to be revieled.

  

Our E-mail Address Is Below

Grace, Jake and Samuel