THE COX KIDS HOMEPAGE
Cox Kids Homepage
We have three kids, Jakeb, Grace and Samuel Cox with an Inheriated Bone Marrow Failure Syndrome. It is genetic and they have been diagnosed with Shwachman-Diamond Syndrome. It is a very rare disease that has so many features and can involve ANY organ or part of the body. It wasn't caught until our third son was born and even then, it took two years before our oldest was finally confirmed and has been such a frustrating process.
It's difficult to even fully understand what our family has endured. As a young mother of my first born son, Jakeb Nolan, I was so naive and passive which is something you cannot be if you have one child with a rare disease, certainly not with three! It wasn't that I didn't want to believe they had a disease or that we were in denial. As a matter of fact, I pushed hard, knowing their was something wrong but being assured that everything was explainable.
The most difficult part of this disease has been trying to get doctors to listen to me explain what was happening with my children. That indeed, they were not normal even though we, as parents, desperatley wanted to believe that all was well. As young parents, it's easy to trust what doctors, specialist, family and friends say. It wsn't until the internet and finding support groups that I was finally valited and found other mothers, parents and patients who were up agaisnt the same thing.
Our journey started out with a mother and father who were young and looking forward to having a family. As we look back, we see so many obstacles we have overcome and have so many more yet to embark upon. The one constant that keeps us forging ahead, is love. Our children have been through so much and any parents would trade places with their children and take away any pain they will face. The physical, finacial, mental, emotional and spiritual impact is difficlut but it builds a bond between each other and to one another that surpasses the heartache. As we look at the medical community and blame them, we, as parents feel shame and we know we to have failed our kids, each other and others but it's the love that keeps us fighting and it's not about the times we have lost but if we have learned anything from watching our children suffer, its that they endure and never stop trying. To pick up and carry on, to never give up or in on one another. To love unconditionaly and in spite of mistakes made, we are always and forever family.
I started to get sick with everything they had and we have brought that to the attention of gentists and doctors but thus far, I haven't had my bone marrow examined. Weather I have the immune part of the disease, or I aquired autoimmune diseases from exposure, it's hard to know. As a child, I had some of the dental and recurring infections and low energy. I lost a great deal of blood with Jakeb. I than suffered a series of illnesses that would last throughout my child bearing years and I would develop several autoimmne disease, including Hashimoto's Thyroiditis, Lupus, Pario Virus B-19, CMV, Epstein Barr and C-Diff. When carring my daughter, Grace, I suffered with Severe Hyperemeis and was on I.V. fluids through much of my preganacy. Looking back, my health wasn't good but denial and lack of aknowelgement by healthcare providers, has been a staple in our life.
We are so excited to learn that our annual fundraiser, Freezin For A Reason, Lake Winnebago Wizzards is not only on again but this year it is tax deductable! Thanks to the many people who worked so hard and thanks to the Lake Winnebago Lions Club. The Lions club is a 501(c)(3) organization. You can send a check payable to Lake Winnebago Lions Club Foundation with "Freezin For A Reason" in the memo. This year you can also donate online at www.e-clubhouse.org/sites/lakewinnebago/page-9.php.
For a wonderful day filled with skiing in frigid temperatures, music, food, auction and simply a joyous time together, please join us at the Arrowhead Yacht Club at Lake Winnebago, Mo, On New Year's Day, 2015. If you have any questions, please call us Christoher and Vickie Cox at 816-694-1040. No matter the weather!
This annual event has helped our family in so many ways, that it's hard to put into words. The number one thing that we as a family can always say no matter how much is raised, is the outpouring of love that we feel year round from this warm event from what is in our hearts as our home. It is the place we have the fondest memories of family life and normalcy that can be felt. It gives us something to hold onto all year long and even though we aren't all always able to attend, those of us who are left behind, feel it the same way as those who go. We thrive from this event. It is why our family still longs to belong back home and while we pray that oneday that happens, we are honored that they continue to help us.
Check out the Freezin for a Reason facebook page
It is so rare to have three kids with SDS or any inheriated bone marrow failure disease. It is a one in four chance. We took Jake to all kinds of doctors for stomach trouble when he was young and even Mayo where we were assured that our daughter had a non geneitic disease and misdiagnosed her with Autoimmune Neuotropenia. We would only learn that Jake, our oldest had this after we had our third child, Samuel. He was neutropenic but not as severe as Grace. We later would learn that they have chemotaxis issues (meaning the the white cells, most of which, 80% of our white cell, fighting infection cells don't function so when Jake's neutophil counts came back as lowe to normal, they were not working.) We are grateful for all three of our children but even had we known about the potential disease, it is very rare to have three altuough we are no longer alone as we know of two other families with three. Many that have only two children, have this disease but for the most part, there is only one child effected. On top of that, it is very rare to have all three be in any kind of marrow failure. Since only essitmates of 30 to 70 % of kids with this, will develop Acute Myloid Luekemia or Aplastic amemia or Myodyplastic syndrome and even some solid tumor cancers occur. All three of our kids are in mild to severe bone marrow failure. Jake is in a very dangerous place but without finding out why his stomach and intestines aren't abosrbing food without a feeding tube, the chances of being eligiable for a transplant is rough or to survive it. So we are working hard to get care for his stomach so we can be ready for a bone marrow transplant. Grace has only one kidney and was found to have two cervics and uteruses after years of being to the top hospitals in the nation, including St. Judes which doesn't deal in such rare diseases, only in certain types of rare cancers. It's a wonderful place for those it serves. We have been to Seattle, Salt Lake, Duke, Cincinnati Children's to name a few and we are trying to get them into the only place that treats both children and adults which is Phildelphia Childrens Hospital in PA. as their is a doctor there who came from St., Louis which we have also been to who we have known and tried to get her to take intrest in our children but thus far, she has been unwilling. We recently went to Minnesota Childrens after a few familes we know who are in the same boat and find that getting care for the many issues these children endure from GI, Pancreatic insuffiency, female and organ, skin birth abnormailities which sadly can touch any or all organs in the body including all three of our kids immune system, is so touch to get care for them now in other areas besides Bone marrow failure doctors in adult care and childrens care. This has been so frustrating and on top of their issues, my own health from having C-Diff illness that resulting in my poor health and even though Jake and I both had fecal transplants in NY, we have long term damage which resulted in his GTUbe and my immune system has taken a hit either from something I had and did not know or exposure to so many very bad life-threatning illnesses that I as the primary caregiver was exposed too.
We have witnessed so many miracles as our kids fought off deadly diseases and viruses and saw them live when they should have died. We have been blessed by other giving and help that comes our way and are amazed at the outpouring of love and compassion that others display. This has been a very difficult time for us as my health put's our entire family on a hold that as the leading advocate, caregiver, teacher and dealing with insurance companies as well as reseacrh and being activerly involved in comferences and camps is crutical to learning and advocating for our kids. As a mother, it has been heartbreaking to have to withdrawl from so many accpects of a normal life even for a sick child. I feel responsible for their lives and no one person can handle such a load. Stress, is an ever present part of our family but we used to have more of everything which helped us to lead as close of a normal life as we could. This has been discouraging to all of us but for my hsband who shoulders the etire families well being by staying employeed and having good insurance while dealing with all of these issues is more than two full time jobs, we know he has always done his best to provide but no one is perfect and things happen putting us in even greater dispear.We are wanting to come home but we left knowing their wasn't care for our children there. Yet, the outpouring of friends and family is so great that we are praying that God can show us where He wants us and our hope is that we could either etablish care in P.A. and live there or move home and pray that my health improves so that we could travel when nessasary for our kids but have the life we all long for again. It's an alomost impossiblity until our finicial situation improves to move our famiy so that we could be together, which depending on one another and Christ for so much has shown to be the greatest need right now. We are currently seeking a solution for that very thing.
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/
Luke 21:1] As he looked up, Jesus saw the rich putting their gifts into the temple treasury.  He also saw a poor widow put in two very small copper coins.  "I tell you the truth," he said, "this poor widow has put in more than all the others.  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 email at email@example.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.
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