THE COX KIDS HOMEPAGE
The Cox Family
We would like to say Merry Christmas to everyone and may your time with family and friends be so blessed. We are doing so much better than we have in years past. Jakeb, was finally diagnosed with yet another disease, Crohns and the formula was changed to Vital 1.2 which is continuous unless he fells he can eat. He nearly died last January as he lost 27 pounds in about eight days. Ironically, we had taken him to two ERs in Kansas City but no one could or would help. We had no choice but return home where at least he could be seen by our family doctor who has a heart. Normally,something big, we head to Cincinati but since their doctor has retired we haven't had as much luck. He was far to ill for the drive to Duke so we went to Mission, here where we live and they found what none of the doctors in a host of the finest Childrens GI hospitals did not find. For almost five years that child suffered and our family did as a whole. Grace needed me but I too feel sick with CDIFF and she was afraid to catch it, smart girl! Samuel too suffered as it's hard to be normal when your mom and brother are so sick. The fecal transplants in New York in which without the years of support, we would have died, made that big of difference. A debt we can never payback but Lake Winnebago is forever our home and sealed in our hearts. We were just too sick to come home. Thankfully, a small hospital took the time to really dig and run tests and found his Crohns and he finally is in college doing well and dating girls. He is thrilled to have a second chance.
Many of you didn't know that I have never had stellar health. After Jake was born premature, I developed Hashimotosis Tnyroiditis and struggled after having a blood clot when they removed the lump from my throat. While pregnant with Grace, I had Severe Hyperemesis and was on IV fluids most of the time. I almost died and thanwe received the news that she's tooo, would likely die after birth if we went on with it. She had three large cystswhere her right kidney should be and terminating the pregnancy was their advise. I am on several support groups and one is the angels who passed away from the very disease she has. That day we found what I already knew, she was a girl. Not just any girl but our girl. Chris and I had been back and forth on names and he looked into my eyes and said you name her whatever you want, so Grace was given for it was the Grace of God she would be born.
Than came the misdiagnoses and we really should speak to a great attorney over all the negligence and misdiagnoses. I guess we hope it could give them a better chance at life and getting help. the biggest reason we haven't done that is simple, God has always provided a way and most importantly I have Samuel who is statitixalynot suppose to be. Thus far, ifI wrote a book on all the medical mishaps and unbelieveable stories we have, I don't think anyone would believe them to be true. I have seen movies of one major miracle but I have yet to have seen anything as close as to the really five miracles we have in this family. All this I say because it is Christmas and God is the giver of miracles. He sent His only begotten son who was sinless and pure to take the sins I and my husband have committed and He carried those very sins to the cross of Calvary so that not one of us will bare the sin brought to us by way of one mans sin. MY children have a long battle ahead of them and we have made many mistakes but we raised our children to know who their maker is and what's He has done for us all. AT such a tender young age, will they reject His many miricules feeling they have somehow been cheated I do no that believe so and I have not yet been wrong when it comes to the intuition of a mother and child.
None of us deserve anything good, for we have all sinned and come short of the glory of God. My husband and I have let down our children with the same sins that have been passed on from generation to generation but no one will ever tell my children that because of our sin or their sin, they are sick. If that were true, than why the many miracles and why the love we have that will bind us even when we may not feel it. We are forever in love with you three children Andre will never give up on you nor will Jesus. Please, don't give up on yourselves or your faith. Too many people have placed too much of their own faith in you!
This year, we are simply grateful for the season of health. If anyone would like to help our family, the Lions Club has bee not doing this and we will check to be sure they are still continuing. As always, our family is thankful for the support we have found and still hold a hope that maybe one day we may be able to come home.
Write a check and send it to: 289 Winnebago Dr, Lake Winnebago, MO 64034 with a check payable to: Lions club of Lake Winnebago Foundation.
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. He is now our sickest child. He has been sick five years, developed C-Diff and had a fecal transplant in NY, as well as pancreatic insuffenciecy, resulting in a G-Tube and his marrow has weakened as well as his quilty of life, deminished. It is with a heavy heart to know when your child is unikley to get better. He suffers daily for hours on end with nausua, vomiting, diarrhea, fatigue and extreme pain.
While they have been diagnosed with SDS, they have yet to have tested all three of our kids or Chris and myself with the full panel of genetic testing we feel we need to insure a true diagnosis. We have been dealing with this for 21 years and our oldest has been so sick for five years. A bone marrow transplant doesn't cure this disease, it only prolongs life is it is given before a child is too sick to endure it or before they have developed Acute Myloid Leukemia or Aplastic Anemia. We have been told that Jake is in Aplastic Anemia but we plan to seek other opnions. We want genetic testing done through a private company unless we are able to find a doctor willing to test us all and release the testing to us versus a study where we are not always allowed to receive results. We know they have an Inheraited Bone Marrow Failure Syndrome and no matter which one it is, the treatment is the same but when to give it difffers. This kind of testing is not covered by insurance and is expensive. We are also looking for other places to deal with Jake's GI issues that prevents him from getting better and in the long term, a transplant. Even if it isn't in time for Jake's life, it will help our other two children and possibly other kids who suffer with similar issues as our kids do.
This has been a long journey with so many ups and down's. They all three have Primary Immune Deficiency and receive weekly IGG (Introvenous Immunoglubulions) infusion's. They take Neupogen as needed. Grace was born with Multicystic Kidney Disease and later diagnosed with Uterus Didelphys. Jakeb, developed C-Diff and part of SDS is pancreatic unsufficiency and has a G-Tube. Any Inheriated Bone Marrow Failure disease is extremly rare. A Bone Marrow Transplant is the last resort for survivial in these particulair kids. The considerations for such a procedure involve the current state of health and risks that may put them at greater risk for death. The statitical chances go down with poor health, such as Jake's G-Tube and Grace, having one kidney. It isn't out of the question but so many factors are part of that decision. We have three kids with this and my own health hasn't been great. I feel sick with C-Diff along with Jake, leaving our family in a venerable situation but I have recovered and together with Chris, we are determined to find the best overall care for our children. To have three kids with life-threatning diseases, the cost of care is un-ending. Their reslove for living as normal a life as possible, endearing and admirable.
We have been blessed with so much help and we are thankful for it. We have had a rough time finding compherhesive care for all of us that will cover adult and pedicatic issues with such a wide variety of health care issues. When the main caregiver goes down, it's nearly impossible to do but I am getting stronger and we believe that God has a plan and a purpose for this family.
Luke 2:10 And the angel said unto them, Fear not: for, behold, I bring you good tidings of gret joy, which shall be to all people.
Psalms 100: 4 Enter into his gates with Thansgiving, and into his courts with praise: be thankful unto him, and bless his name.
Grace, Sam, Jake, Vickie and Chris at Camp Sunshine Maine
We maybe reached by phone at 816-694-1040 or mail by 160 Sandsridge Way, Waynesville, NC 28785
We are on Facebook, firstname.lastname@example.org Under VickieChrisHurleyCox.
Our E-mail Address Is Below
Grace, Jake and Samuel