Parents Sara and Paul are on a mission to save their daughter Marian’s life who was born with a rare storage disorder called Niemann-Pick type C, which has symptoms that mimic Alzheimer’s.
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I don't know if anyone's interested in donating but they have their own website which is www.hopeformarian.org/donate they also have social media page on that website, they seem to post updates a lot on their Facebook page, just in case anyone was wondering how Marian's doing and wanted to help the family!
Spinal taps are unbelievably painful. I had one in 6th grade and was injected with pain killers before hand, and it still hurt like hell. I was out of school for weeks afterwords due to migraines and vomiting as a side effect of the pain killers.
The kid has Leaky Gut Syndrome that is allowing an endotoxin known as Lipopolysaccharide from Gram (-) dead bacteria to escape the tight junctions of the gut where it enters the bloodstream and causes a low-grade systemic sepsis and it even passes through the blood-brain barrier and the immune system recognizes it as a bacterial infection and begins attacking the organ (RA, MS, Parkinson's, IBD, IBS, Crohn's, Myositis, etc.). These are all the same diseases - Leaky Gut and Metabolic Endotoxemia. Here's just one study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591429/
Why are they calling this "childhood Alzheimer's" when it has nothing to do with Alzheimer's? This little sweetheart has a distinct disease that causes memory loss and other neurological deficits. It's wonderful that she's responded well to the trial medication!
Bull! It's Lyme. The parents won't research. Mom most likely has lyme & passed it on like I did . These tv doctors are idiots. Real great doctors do research, not tv. Same symptoms as lyme. Even the plaques on the brain.
IF ANYONE WANTS TO DONATE for research for rare genetic illnesses, I highly recommend the Global Genes Project. It's a fantastic charity dedicated to raising money for research for treatments and cures for rare genetic illnesses. Over 60% of people with a rare genetic illness are children. That statistic sounds bad enough on its own, but it gets a lot worse when you realize that that means most people with a rare genetic disease won't life to adulthood. That's horrifying and we need to be willing to do our part to help improve those statistics.
February 28/29 (whatever is the last day of February) is Rare Disease Day. Consider having a work donation drive where people who donate are allowed to wear their blue jeans to work on that day. It's a fun way to raise a few bucks, you don't need to spend money to raise money when you do this kind of thing, and people frankly love getting to wear jeans to work.
I have a rare disease and also require spinal injections every other week. I'm given IV pain meds, plus IV lidocaine to prevent my body from having a bad reaction to the trauma of an IV and spinal injection. It. Sucks. For me, it's just part of life now, but I'm 30 and I'm used to this sort of thing. But for this little girl, so sweet and innocent - all she's known is a life of pain and doctors. It's hell for a little one. I'm glad she has such a loving, awesome family behind her.
This disease is devastating. This treatment was pioneered by a family who’s children also suffer from this disease. They faced push back at every turn. Thank goodness they got things approved. If they can do it, imagine what qualified researchers would be capable of with enough funding.
Its the extreme neurotoxic heavy metals in the vaccines, Aluminum, trace amts of Mercury. Squalene, MSG, Ammonium Sulfate, Amphotericin, Amimal tissues, pig blood. horse blood. rabbit brain, (changes your DNA ) Dog kidney, Monkey kidney cells (from diseased animals),changes your DNA..called transhumanism, Chick embryo, duck egg, Calf (bovine serum), from aborted calf, Betapropiolactone, ..btw..you looking this stuff up?.... Not halfway through list....
Formaldehyde snd Formalin ( embalming fluids) ...feeling sick yet ?! well..how do you think these kids feel??..ok more..Gelatin (causes problems in brain ), Glutaraldhyde ( extreme HAZMAT sterilizing chem, Mercury.. Thimerosol snd Merthiolate, MF-59 oil based adjuvent composed primarily of Squalene, Tween 80 & Span 85 ( causes MS and paralysis), Neomycin, Phenol, Phenoxyethanol (antifreeze) and the list goes on incl lead, acetone (nail polish remover ) Live cancer tumor cells, human aborted fetal cells..detergents, polysorbate 80 (thins blood brain barrier )..did you see ABORTED HUMAN FETAL CELLS..these can cause cancer and disease! ...this girl needs a Biomed detox and protocol. .not more drugs. Find a,DAN doctor and Homeopath.
Look up the outcomes of aluminum in vaccines changed from mercury...both harmful and responsible for auto-immune conditions. How can this continue in the 21 century. Total foolishness. Vaccines with these toxins are the root of many of these conditions. Look up vaccines that caused harm historically. Stop beliieving what these specialists tell you. They are con artists or very un-infomred. Mothers use your intuition. Trust your gut feeling. I suffered at the hands of these doctors for years untils I sought help else where. My trust will never be in medical doctors again after my experience. Parents protect your children.
whites have all these strange disorders and diseases bc of their perverse obsession with blond hair and blue eyes, both recessive traits on genes that are prone to mutation, they also dont have the genetic diversity necessary to make these diseases go dormant and eventually extinct. i laugh at this predicament bc hundreds of years of racism and "racial preservation" and these are the results--diseases that wipe out your children bc your genes are too weak to withstand them. karma.
Zoe Jeneth Yeah, I know how genetics work. I also know how a good healthcare system and more developed countries work as well. Do you have any proof at all that white people (on average) develop strange diseases at a higher rate than non-white people ?
I know this doesn't compare barely at all. I am type 1 diabetic and there is no cure. However, we do take insulin and stuff but I know how it feels when there is no cure. Again, I know this doesn't compare barely at all
Community pharmacists are the health professionals most accessible to the public. They supply medicines in accordance with a prescription or, when legally permitted, sell them without a prescription. In addition to ensuring an accurate supply of appropriate products, their professional activities also cover counselling of patients at the time of dispensing of prescription and non-prescription drugs, drug information to health professionals, patients and the general public, and participation in health-promotion programmes. They maintain links with other health professionals in primary health care.