Battens Disease, A Parents Nightmare
In case you haven’t been following the news you may have missed the story of little Hailey and her mom Miranda’s unfortunate encounter with Air Canada and Air China.
Hailey, who is five, has Neuronal Ceroid Lipofuscinoses or Battens disease. She has lost some brain function, has seizures ( at least 50 a day, down from about 500 ), is going blind, and does not even have enough function to clear her throat or eat enough to live. She has had a feeding tube put in and her parents have to clear the constant congestion in her throat themselves. There so far is no known cure and children with this disease die before they are teens.
Hailey’s mom Miranda and her husband Eric have tried all kinds of medications. diets, therapies, treatments, but to no avail. Hailey is getting worse. If this isn’t bad enough for these parents to deal with, they have a younger son who also has this disease.
Miranda was told by some other parents of children suffering from Battens, that there is some very hopeful stem cell implantation’s being done in China. Hailey will require three trips for the treatment at a cost of $50,000 each, and her little brother Carter will also need three trips at about $35,000 each.
They were accepted for the treatment and finally there was a glimmer of hope. The trip started out fine until they had to switch planes in Canada. Hailey was very congested and the airline people at Air Canada would not allow Hailey to fly. Miranda tried Air China, but those people too were ignorant and refused to take them. Hailey and Miranda had to fly back home, devastated.
Congressman John Yarmuth of Kentucky heard this story and is trying to help make arrangements for Miranda and Hailey to go to China.
I find it ironic that these airlines will fly a kid with a deathly allergy to peanuts knowing that there could be some on board somewhere, but won’t fly a child to try and save her life. Canada and China, what a surprise. The people who were involved in losing some of this child’s precious time should be deeply ashamed of themselves.
The family has a blog set up called Hailey & Carter’s Dream. They need to get the word out and raise money for the other trips and treatments, so visit the site and help if you are able.
Four Epoch-making Discoveries by Nandlal Kanjibhai Pancholi
I have made four epoch making discoveries in the core area of medical science by inventing medicines that actually cure Psoriasis,Paralysis,R.A.Fctor in Blood (Rheumatoid Arthritis in Blood) and Uric Acid in Blood without any side effects.Harmless medicines are given directly to humans and the above diseases have been cured.I want my above inventions to be used for the welfare and well being of mankind.Therefore I appeal to the medical fraternity of the United States and the whole world to help me in this noble cause.They can verify the facts stated here by whichever method they deem fit for such verification.Further I deserve a separate Nobel Prize for each of these inventions in the core area of medical science.Many people all over the world are suffering from these ailments.They can be benefitted by my above inventions.I do not have any infrastructure to make my above inventions available to the patients of these ailments all over the world.Laboratory analysis of Bombay based recognised firm has carried out analysis of my invention and found it safe for human use.This invention of mine is neither a cerendipity nor an accidental discovery.After painstaking research of ten years I have been able to make these epoch-making inventions.My purpose is to sell all four inventions stated above to a pharmaceuticals reserving my intellectual property rights and right to get Nobel Prize for each of these inventions.Pharmaceuticals of United States and The whole world are hereby informed to bid for above inventions.They will be given a chance to verify the efficacy of the products.The highest bidder shall get exclusive right to manufacture and market above four epoch-making inventions.Inventor’s name:Nandlal Kanjibhai Pancholi.Inventor’s email
address:ayurcure@yahoo.com.Inventor’s contact no.9228856098.Inventor’s passport id:A 5850395.Inventor”snail mail address:309,nanubhai tower,oppo mahesananagar garba ground,nizampura,baroda,gujarat india
False Positives In HIV Tests
Hundreds of New Yorkers found themselves scared out of their minds when they were given HIV tests that found them positive for the virus.
In turns out that they were given the “quick response” test which is saliva testing. The New York Health Department started noticing that there was a great increase in those who tested positive for the HIV. When they investigated further it was found that many of these saliva tests were giving false positives, although they still haven’t figured out why.
In the meantime they are changing the way they test by giving only blood tests instead of saliva tests because the blood tests have proven to be more accurate.
I imagine that there are a lot of very relieved New Yorkers today.
Pro Life Pharmacies
I was not too happy months ago when I read that certain pharmacists were refusing to fill doctors prescriptions for the morning after pill. They may have moral or religious objections to it, but their job is to fill prescriptions per doctors orders. Their job is not to pick and choose for the customer. I didn’t agree with it then and I don’t agree with it now, however I can understand how they feel. I believe they should find another line of work.
Now, however I am more than not happy, I am incensed. A group of pharmacies have formed what they call Pro Life Pharmacies and they are spreading in several areas of the US and in other countries.
They not only won’t sell the morning after pill but are not even stocking any kind of contraceptives. This means that any woman who does not wish to get pregnant will not find any kind of help even with a doctors order. These pharmacies won’t even refer the woman to another pharmacy that does carry these items.
Of course, so far they have every right to sell what they want, but I then also have a right to say what I think of them.
They are a bunch of religious fanatics who are so arrogant to overrule one of the first gifts the creator gave to man, and that is free will. They support free will for themselves and yet they take away women’s choice in exercising her free will. The Lord may teach us that murder is wrong, but he allows us to make the decision for ourselves whether we are going to do it or not. When we do something sinful or wrong we will be dealt with by our creator which is a very private matter that no man should interfere with. I am talking mainly about preventing pregnancies and not aborting them.
This must make these fanatics feel real good about themselves, and superior to their female customers.
Also note that they continue to sell Viagra to their male customers.
Mercury Vapors From Dental Fillings
I came across this video and thought it was important enough to post here. It shows the mercury vapors that come from mercury fillings in teeth. The video certainly gives us something else to worry about.
Parents Suing Over Son’s Peanut Alergy
Parents of a young boy are suing American Airlines because when they reserved their tickets they explained to the airline that their son was deathly allergic to peanuts and they needed to be reassured that no peanuts would be served on the flight.
During the flight, however the mother got into an argument with a flight attendant who was serving hot peanuts in the first class section.
The parents are both doctors and had a kit with them in case the child went into the suffocating shock. The child was not affected by the incident but mom and dad have decided to hire a lawyer and sue the airlines on the grounds that they violated their sons civil liberties.
My question is if the parents were so concerned about their sons exposure to peanuts or peanut dust they should have taken private transportation. Allergy to peanuts has been deemed a disability and as such, the airlines is required to take the appropriate precautions. The problem is how can they assure the parents that someone wouldn’t sneak peanuts aboard?
I can’t help but feel if that was my child I wouldn’t take the chance of leaving the responsibility of protecting my son from dying to someone else. I think I’d rather drive across the country if a trip was necessary. Isn’t their son’s life worth the extra time and miles?
Antibacterial Wipes, Friend Or Foe?
The Welsh have done a study concerning three different brands of antibacterial wipes. What they found is that while these wipes do kill bacteria and remove bacteria from the surface wiped, some remaining bacteria still live now transferred to the wipe.
Many people will use the wipe on one surface, pick up live bacteria and use the wipe on another surface transferring the bacteria there. The advice is that you throw the disinfectant wipe away after you’ve cleaned each surface. If you don’t you’re only spreading bacteria.
Remember also that the main culprit in spreading germs are your hands. Wash your hands in warm water and soap. The germs are lifted by the soap and are rinsed away in the running water. Use soap that is not antibacterial because we overuse antibacterial products and are actually strengthening the bacteria that we don’t kill.
C-Sections May Raise Insurance Rates
A healthy woman applied for family health insurance and was rejected because she had two c-sections. The insurance company says that woman who have had this surgery will most likely have it again and they do not want to cover it.
Different states have different policies on this matter, as do the insurance companies. The really bad thing about it is that this woman now has a rejection on her record which can negatively affect future insurance applications.
Of course the insurance companies don’t want to pay for this but they are saying that most of these surgeries are not necessary and are done for convenience .
I myself have had two and believe me, they were anything but convenient. With over 31% of children born this way this could become a big problem for women and their families.
New Jersey Elders Getting The Shaft?
New Jersey Assisted Living Facilities are under investigation after it was found that several residents of these homes have been “kicked to the curb” after their saving ran out.
Seniors and their families are being told that once the seniors savings run out to pay for their stay, that medicaid will kick in and take care of it without interruption of residence. However in one home the resident and her family were told that the home had changed owners and policy and that they no longer accepted medicaid. In this instance the woman’s family fought it and she got to stay, but as her daughter points out, there are many seniors who do not have family or friends to stand up for them, and they will be turned out on the street or to who knows where.
New Jersey officials are investigating to see how big and widespread a problem this is and hopefully will have a solution for those who need to be looked after.
Massachusetts Health Insurance Law
Massachusetts has reported that it has fined 100,000 of it’s people for “being able to afford” health insurance but not having it. They say they have raised over 9.7 million in fines which they are using to pay for this law which was estimated to cost over 900 million dollars.
Under this law you must prove that you cannot afford the insurance or be fined. They have set up some insurance plans that they say people who earn even three times the poverty level can apply for and get.
I have been around long enough to know that sometimes when you apply for state or federal assistance, they only look at your income, and maybe your rent/mortgage and utilities. That’s how they decide if you can afford it or not. They refuse to recognize credit cards, loans you may have, medical bills, school tuition’s, groceries, car gas, insurance, etc, etc, etc.
I do not know if this is the case in Massachusetts, but as an uninsured person myself, I resent the government telling me what I can and can’t afford, especially when they are responsible for taking some of my earnings to pay their own salaries so they can afford it.