I am a mother of three kids with a genetic bone marrow failure disease and immune defiency disease. We, my husband and I were told at Mayo our daughter had another disease that was not genetic even though we are both in the health care filed and thought our oldest seemed ill as well. Then we had our third child, a son like my oldest and he was born with neutropenia, lack of while blood cells to kill bacteria. This was tramatic as we then knew our oldest had to have it and traveled to get a diagnosis which Shwachman-Daimond and undiagnosed immune disease is as close as we have gotten. They are horrible disease with many health issues ranging from bad teeth to bone abnormalities and organ involvement to lifethreatning infections and Acute Myloid Leukemia or Aplastic Anemia. We moved away from our home to be close to Duke so my daughter could have a transplant. None of the doctors have ever made much sence and change their minds daily. We did finally find a good man who is helping these rare kids with this rare disease that honestly, they pretend to know but do not. At least we are fortunate to get the best care we can right now at the best place but concerns with overwhelming medical costs and my husband losing his job are present. I would like to give hope to those who so need it as I happened upon this site looking for aid with braces. God has been so faithful to our family. Sometimes, it can feel like no one cares but He does care. Why does He allow us to suffer? He suffered greatly for us and why should He have. I know it can be little comfort but from a family who has been through so much as there is a whole lot more to our story than just this, we have found fellow man and God to bring us great comfort and help. My husband and I have often thought, why do so few have so much and so many have so little. There are many ways to look at this and for us, our JOY, is in our hearts and minds and nobody can take that away. Our kids are here with us know and that is an amazing gift that comes daily. When we start to feel sorry for ourselves, as everyone does, e think of those in third world countries with illness and pain and suffering and of war. It's all how you look at it, it's all in the mind!
