Health Care Reform
First, our family wants to say thanks to the many who have made our world a very different one by the overwhelming help we have received. We know that God has blessed this family beyond anything we could have ever imagined. In fact, the every struggle we had or have to endure, is one that God has blessed us with. In the midst of a storm it is hard to see over the waves but there is a calm like none other when it is done. That is our Father in heaven who promises never to leave or forsake Him.
Second, we are in no way endorsing any political position. We are just a family who happens to know a lot about this. I would never want to write any words that would cause anyone to think for one moment we don't know how blessed we are that our kids are here and by the way they are here. They would not be here if not for God and many people who didn't care about politics but did care about our kids and thus have helped us in so many ways, prayer which has brought about everything, those who give and everyone of you who have given a thought to our family will be blessed. In the end, it comes down to people and who could look at our family and all that has been done and deny it isn't a miracle! Each person and we will never know how many have had a direct hand in the most precouis gift of anything, TIME!
We don't know what the right thing to do is. We do not want one big Medicaid system because we have watched too many kids die on that. Still, that is wrong and just becuse God has blessed us, doesn't mean we shouldn't speak out about the other murders that take place. Those who do not have insurance, can't raise their 200K before the transplant or the doctors simply do not tell them and they die. IT HAPPENS! It too is life and worth fighting for. Again, God has blessed us and I think our community and church is amazing. We have had a Christian company talk to us about the story of a church and community who did something for a family! So we know we are blessed. We are also aware that God is close is at hand and we honestly pray for His coming. We know many need Him and we want to be that family, well enough to tell our story and in some way encourage or move people to God. We do not believe in Abortion or Stem Cells transplants from emboyos but we do support steam cell research from umbilical cord research.
We are completly against cutting Medicaid and Medicare in anyway. We want Social Security because families like ours, do not have a 401K or pention plan. We didn't loss our home in Winnebago, instead we lived in our travel trailer, no slides until our home sold. While many got breaks on their morgages, I assure you, it wasn't to anyone with health care issues. It often does seem that those who are wealthy know how to work the system, can afford laywers to buy their way out of trouble. Often, it can seem unfair to many who lost everything due to lack of work while others, simply over spent. It isn't fair but neither is life.
Not one doctor can tell us how much time we have. All we can go by is the small amount of studies which doesn't look good and trust us, we have sleep many nights with our children between us with our hands on their chest making sure they were breathing. There were so many close calls and Chris, I and God know. If we believed all or any of the doctors really truley knew what ALL they have, we would invest in a cure but we know the reality is, the facts are, the doctors are just watching and waiting because these kids with this type of diseases are the first to really be studied. They simply do not know what to do.
I grew up very fast in my home as a kid. My parents both suffered pretty major illnesses. My father, who fought in the Korean War, developed a brain tumor, later thought to be associated from exposure to gas in the war. He was a very sick man who nearly lost his life but he fought back and by the grace of God, he lived. Soon after, my mother developed a rare cancer from pesticides used when she was young and picking fruit. I watched my parents struggle all my life to keep the home they had worked so hard for and try to keep insurance that continued to be raised until they could no longer pay the over 2000 per month in the 80's. I can say, I wasn't a spoiled child and I grew up very fast. I saw what insurance companies were there for, to make money!
When I was pregnant with our son Jake, we didn't have maturnity and I went to a free clinic. I new what these were as my mother had been in them at the end of her life. You wait a very long time and your care is pretty basic. I was not given any pain medication because I was in the clinic. Jake's cord was wrapped around his neck twice but by God's grace, he was ok. http://www.photius.com/rankings/healthranks.html
When I was pregnant with Grace and had been so sick, unable to keep fluids down and then found that she had cysts where her kidney was and between the rough pregnancy and these cysts, I was presented with the idea just to end it all and have an abortion. This was just a rough preganacy, though I had lost so much weight it was to a dangerous level and a feeding tube was considered, God changed my pregancy and by six months along, I was feeling much better. My sister had suffered a similair experience and made it and so did Grace and I. We believe in the sanctity of of the preservation of life. We have put our children in His hands but that doesn't mean we do not fight to find the best treatment, fight to have insurance pay for that in which they should. We did support and do support LIFE which means we support the right to health and Health Care.
Any parent with a sick child would supprt this or you as their parent would not be doing their job in protecting life at all costs. LIFE is not just within the womb and Jesus cares about every life. He knows the number of hairs on our head, He cares deeply about all the children, those in the hospitals fighting for their lives, mine fighting for their lives and children going hungry and families who are hurting. He also care about adults and elderly people who deserve to know they will be treated with dignity and respect if they fall ill. All people deserve this basic right.
God has been very good to us and our family. There has not been one day go by when we haven't thanked Him for all He has done and for the many who sacrifice just to help our family. We all know how blessed we are. He has taken care of us and for that we are forever grateful and would never want to offend anyone. Still, we know too many others who have sick and dying children and are without such help. We feel God wants us to speak out for those who can't. All those children deserve a chance at life. They deserve the best care they can possibly aquire.
There are many of you know who maybe blessed with great coverage but I assure you no one is immune from having a catastrophic illness and many American are continuing to loose their Cobra and can't afford it or it has run it's course. We want to protect Medicare for all those who have invested and depended on it. Most poor people cannot put back money in a saving account for retirement, now more than ever, people are just trying to survive.
Not any parents could stand in our shoes and tell us they would not want steps taken to protect your children and their care by having such a law as making certain, children are covered no matter what. This isn't much of a health care reform anyway. In order for us to qualify for such insurance, we would have to be without insurance for six months to a year, depending upon your state in order to qualify. That means if you had anything, you won't by the time six months is up and with such sick kids, you couldn't take a chance and would end up on Medicaid anyway. You wouldn't have anything left after six months to a year and would only be able to get Medicaid after depleating all your accets in most states.
Please, just take the time to understand what is really happening and why this is such a hot topic. We would pray for a better way for the future of this country and we know if politics and insurance companies would get out of the way and instead hire some of the brightest people in the country to find a way to make our country NUMBER ONE in health care. Pray for all those involved in politics to dig deep within and do the right thing, what they would do if it were them or their loved ones.
Above all, Please remember without God and health this cannot be possible LIFE, LIBERTY and the PURSUIT OF HAPPINESS for while we know our children are in His hands, there are many others who haven't been so blessed and I remember several who are gone. It is the faces of those children that drives me to fight. They are free of all doctors, diseases and hospitals but their mothers hearts are forever aching.
Again, we don't have the answers to healthcare but if our government, whom have some of the smartest people in the world, can't come up with a fair way for all to have a chance of life, than the American dream is gone. The dream that my kids will have a good life, not one stuck in poverty is what is at stake. Now, your children maybe healthy now, as NOWHERE on either side of our families did this disease exsist, can you be certain that down the road your grandchildren or greatgrandchildren will be safe? We need to speak up and stop the fighting and come up with solutions, this isn't about a choice like Gay Marriage or giving the weathiest people a break, this is about LIFE NOW for millions of children and young adults!
http://www.photius.com/rankings/healthranks.html
Let me try to explain Mediciad for instance. Take the Arizonia's Gov.Jan Brewer has taken away the 1.4 million dollars given to the Mediciad transplant program. This is the easiest way to explain the BIG problem with Mediciad. For the young father who needed a liver transplant and who's friend died and gave her liver to him but upon arriving at the hospital was told Mediciad did not cover the transplant and he needed 200K in 2 hours for the estimated 5ooK for the transplant which does not include post transplant drugs that run into the ten's of thousands. So how did Arizona ever provide so many transplants for only 1.4 million, the average cost for a Bone Marrow Transplant is 1 million plus billed to insurance. Arizonia picked liked most states do, the very best patients with the highest survivial rates before given such a chance. If you have a rare disease with little data or low surivial rates and your on Mediciad, your not going to get a transplant. With further cuts to the programs, more people die who could have lived. This is the reason we fight for our insurance. Besides problems with transplant coverage, it won't cover most of our kids medicines nor could we go to out of our state and we would be limited to Mediciad doctors and hospitals, notorouis for being poor quality care. Just pick up the phone and call area doctors and ask if they take Mediciad. Now, while insurance will fight us tooth and nail, we have a chance and we can go to any hospital allowed in our group of PPO which covers the best transplant places. Cincinnati has succesfully transplanted Shwachman-Diamond Patients. Life is what we are fighting for and God has blessed this family so much. I can't just keep quiet when God's children are dying because they are poor or forced into poverity in order to get any care at all. It is wrong to abort babies and it is wrong to allow poeple to die. Both sides of our political system have major flaws and it is a sinful world we live. I do not want to have a big giant Medicaid either. I have no answers but it seems in a country so filled with high intelligence, someone could come up with ways to make it a better system.
http://www.abc15.com/dpp/news/state/az-budget-cuts-include-transplant-funds
http://www.cbsnews.com/8301-504763_162-20023102-10391704.html
