Help Us Save Baby Rachel

Meet Rachel! She is our 20 month old angel with brain cancer. In January (2014) she had a tumor the size of small orange surgically removed from her brain. She was diagnosed with classic medulloblastoma, which for a child her age gives her only about a 30% chance of survival (with typical conventional treatment).

Because of Rachel's cancer, our family had to move away from the sustainable farming internship we were doing in Arizona to have Rachel cared for at Primary Children's Hospital in Salt Lake City (where our insurance was accepted). All of our career plans were put to a screeching halt and, needless to say, our income was severely impacted and our savings are gone. It is all we can do right now to care for Rachel and her dear brother and sister.

Update: Last week was an intense week, to say the least. Rachel started having symptoms again, which is scary, but we also had an opportunity open up that we need your help with. We were told that there are some ways that we might be able to get Rachel treated with antineoplastons. Now, we know that most people that have heard of ANP's have also heard of the controversy around them, but we have looked into them and feel confident that this is Rachel's best chance at a long life as well as higher quality of life. We encourage others to investigate ANP's in detail and watch the "Burzynski" documentaries, as they are very informative. We have talked to families of some of the patients of Dr. B. and have prayed extensively about this option. We can't just look it over because it is controversial. The fact of the matter is that, despite extensive efforts to put Dr. Burzynski out of business or take away his license, his clinic is still open and he is still practicing medicine within the law. The FDA has even approved several phase III clinical trials- that doesn't happen for drugs that are failures. Those who have reallly seen the data know that ANP's are a promising treatment, especially for brain tumors. The response rate for ANP's with medulloblastoma is at least the same as it is for conventional therapy within Rachel's age & risk category (and that is with many patients that have already failed chemo/radiation). The plus side is this: ANP's have no long term side effects and are much less toxic (there is possibility of certain kinds of short term toxicity). We compared this to our 8+ pages of side effects from the chemo and figure, at the very least, ANP's are worth a try. We strongly encourage all of you, whether skeptical or not, to research ANP's. It is a topic that deserves more attention. While I don't necessarily discourage you to read what the skeptics say, I am only listing sources here that I have personally seen verification of the information provided. It is hard to argue with the multiple adult survivors of childhood brain cancers that are/were normally fatal. Dustin Kunnari, for example, is living proof that ANP's work. We're not saying we think they are a "cure all", but the real, verifiable evidence is rather compelling- and hopeful.

While Dr. Burzynski is not allowed to charge for the ANP's (but must charge for other clinic expenses- he has not recieved ANY grant money for research), any of our options for securing them for Rachel will be somewhat expensive- but no price is too high for our precious baby's life. We will be working on various types of fundraising, but we must first work to find the avenue through which Rachel can be treated. Her time is running short. We need your help & support to finish raising the funds needed to treat Rachel. Most of all, we need your prayers.

Very recently, the FDA lifted the clinical hold on the Burzynski Clinic using ANP's, but there are stringent restrictions on which cancers Dr. Burzynski is allowed to treat. However, when Rachel's medical records were reviewed and it was seen how quickly her cancer is growing, there was consensus that she might qualify for an emergency IND (investigational new drug) exception. So, we are submitting an application for emergency compassionate access with the FDA. Our hope and prayer is that they will approve it the first time. As soon as we have approval for access to ANP's, Rachel will start treatment. 

Please help us save our daughter's life. Any amount you can give will make a difference, and we are happy to spend the rest of our lives paying it forward! Please help spread the word!


Here are links for information on ANP's:

http://www.anpcoalition.org/

http://www.burzynskiclinic.com/scientific-publications.html

http://www.burzynskipatientgroup.org/

http://www.burzynskimovie.com/

http://articles.mercola.com/sites/articles/archive/2011/06/11/burzynski-the-movie.aspx




{This is what we previously tried to do to treat Rachel, but we were told the hospital in Switzerland is full so we must seek treatment elsewhere. Please read below for the update. [After a lot of reflection, research and even more praying & fasting, we have concluded that the best chance for increasing the odds of Rachel's survival is a treatment plan carried out in Basel, Switzerland at the University Children's Hospital. It will be expensive for us, and will break up the family for some time while I live in a tiny apartment near the hospital, and Richard and the kids live here in Utah with my mother. We're obviously not thrilled with this arrangement, but we are convinced that it is the best shot we have of saving our precious Rachel.] }

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  • Anonymous 
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    • 59 mos
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  • Beth Putnam  
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Organizer 

Salem Pearson-Thorup 
Organizer
Clearfield, UT
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