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.
Heparin Contamination Not Accidental
It has become clear that the contamination of the drug Heparin was deliberate. It is also clear that our friends in China where the contamination took place, are not going to allow us to get to the bottom of exactly who did it. China says that they want the right to inspect our drug factories if we expect to be able to inspect theirs. Huh? The Chinese are way out of line on this and as a country whose people are supposed to be so honorable, seem to throw out that honor when money is involved. You see while heparin costs $900 a pound, the contaminant costs only$9.00 a pound. You do the math.
The US is not the only country that was affected by this contamination so I am anxious to see what action other countries will take against this company in China. I also wonder how far the Chinese government will go to protect guilty parties.