THE COX KIDS HOMEPAGE
Freezin For A Reason
Once again, the event that has been such a blessing to our family is here! Each New Year, Lake Winnebago Water Wizzards, The Lion's Club and so many other's have come out to support and encourage our family.
This year's annual fundraising event has been changed due to a dredging project that prevents skiing in the lake. While we will miss the gathering itself, we are so happy that the Lake Winnebago Lion's Club is still taking tax-deductable donations via website http://www.e-clubhouse.org/sites/lakewinnebago/page-9.php using PayPal ( you don't need a sign-on to give online)
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