Please visit our new campaign, Rose lost the battle
Hope for Rose - Liquid Hope
$6,000 raised
75% of $8k goal
93 contributors
0 days left
Ended Mar 14, 2016

My name is Tani. My 26 year old daughter Rose was a healthy, normal girl until things started to change when she was fourteen years old.  Currently she is only 66 pounds (at 5'5") and we are trying to raise money for a new tube feeding formula called Liquid Hope and treatments with an Integrative medical doctor that we feel will improve her health greatly.  Please read Rose's whole story below to find out how things got to where they are and to understand the complete picture of the situation.​


​It started with heartburn and then acid reflux, which led to food coming up to the point that within a couple of years, nothing would stay down.  She couldn’t even make it to the bathroom when she had to throw up, so she kept a bucket with her and wouldn’t eat during the day, just so she could go to school.  

​During this time, she was of course losing weight and we took her to various doctors and specialists where she had numerous medical tests, which showed nothing was physically wrong with her.  She was labelled as a bulimic/anorexic, even though I explained that she wasn’t vomiting on purpose.  An anorexic or bulimic hides her illness and does not walk around with a bucket and throw up in front of her family.  The doctors wouldn’t believe me. 

​ It was while I was studying for a medical terminology course that I came across the term, “Gastroparesis,” which means paralyzed stomach.  I had never heard of this condition before so I did some research and discovered that the symptoms were exactly what Rose had.  I convinced a specialist to test her for it and even told him what type of test she needed, which was a nuclear medicine stomach emptying test.  The test came back positive for severe gastroparesis, but no one could tell us what had caused it.  They labelled it as “idiopathic,” or no known cause, and told us her stomach was pretty much useless and all there was to do was just monitor her blood levels and gave us no advice or help besides weekly blood tests.  

​Rose managed to barely graduate from high school, but of course college and all her other dreams were out of the question.  Her weight plummeted as low as 71 pounds during high school (at 5’ 5” tall) and none of the specialists we saw knew much about gastroparesis, let alone how to treat it, and didn't seem to take it seriously. In recent months her weight has dropped down as low as 62 pounds and she is currently only 66 pounds. 

​I continued my research and found out about an Enterra therapy gastric electrical stimulator that was being used to treat gastroparesis successfully for several years in the US, but in Canada was only implanted by a couple of surgeons for patients with diabetes.  

​I narrowed down a surgeon in Montreal and convinced him to implant one of these devices in my daughter and in February 2009 we made the trip and were there for one month.  The surgeon also implanted a feeding tube at the same time, which helped her to slowly gain and she eventually got up to 95 pounds.  

​After almost two years of trying different settings on the device and even making a trip to Mississippi to see the foremost doctor in this type of therapy, where Rose saw him daily for a month, she turned out to be one of the 5% of gastroparesis patients that this device didn’t help and so we had to have it removed.  We couldn’t find a surgeon in BC that would remove it, so we had to travel to Calgary, Alberta for the surgery. Now we were back to square one and didn’t know what to do next.  In the meantime, now that Rose wasn’t eating at all and relying solely on tube feeding, she couldn’t even digest her own stomach acid and would throw up a litre or two of it a day, which led to her needing 23 crowns and 19 root canals and several abscesses.  After all that pain and suffering, she ended up having to have all her teeth pulled in 2012 at the age of 23 and now has full dentures.  

​Of course I continued my research and came across an online support group for gastroparesis and through that found out about several people who had total gastrectomies and were able to eat again, even though it was small amounts throughout the day and certain foods had to be avoided.  We looked into this very thoroughly because removing your stomach is not to be taken lightly.  Once we decided that this was our only real option, we needed to find a surgeon.  

​It turned out that none of the GI surgeons in BC were willing to do the surgery on a patient with gastroparesis, so we began to look outside of our province and once again had to go to Calgary.

​Rose had the surgery and after a month of horrible complications and infections we came home.  It has been almost three years now and unfortunately Rose is still unable to eat and still tube feeds for nutrition.  

​It turns out that the surgeon who removed her stomach left an 8 cm pouch of stomach because it is stronger than attaching the esophagus directly to the intestine. Unfortunately that small pouch of stomach still has gastroparesis and that is why she is unable to eat.  Because Rose is so frail right now there is no way that she could survive another surgery to remove the last portion of her stomach, but we are hoping that in the future it will be an option. 

​Now I must go back five years ago to when Rose dug a tick head out of her leg while we were sitting outside on our deck.  She first noticed the lump on her thigh when she was about fifteen. It was a small lump and because she had another small lump in her arm (still has it) and the doctor told her it was just a calcium build up she thought that was what the one on her leg was. As the years went by it got itchy and closer to the surface and looked kind of dark. She started to pick at it over the period of a couple of weeks. She saw white at the surface, but could see something dark underneath. So finally one day got the tweezers and picked out a hard white thing (probably a calcium build up) and discovered something dark and squishy underneath.  We immediately thought it might be a tick and went inside and did an image search of ticks and tick heads, knowing that sometimes when you get bitten by a tick the body will get knocked off, but the head stays inside. Sure enough the thing she picked out her leg looked exactly like the images we saw. We had heard of Lyme disease, but didn't know much about it, so I did some research and discovered that Lyme disease can cause digestive issues including gastroparesis!  We went to our doctor and asked if Rose could be tested and she had the standard Canadian test (the ELIZA, which we have since found out is not very accurate and most often comes back with false negative results.)  It came back negative, so we moved on and continued to explore other possibilities 

​About a year ago a friend of ours was diagnosed with Lyme disease by a lab in California.  This particular lab specializes in state of the art research and clinical testing for Lyme disease and associate tick-borne diseases.  We sent away for a test kit, had the test done and the results came back 100% positive for Lyme disease, not only by the lab’s standards, but by the US Center of Disease Control standards, which is very rare.  

​There is no doubt that Rose has been suffering from Lyme disease since she was fourteen years old and through my research I have found out that Lyme disease can attack the entire digestive system and cause among other things, not only gastroparesis, but also malabsorption. 

​Looking back and trying to figure out when Rose might have been bitten by that tick, we remembered that back when she was fourteen, we lived in an area known for deer ticks and she used to cut through a grassy, wooded property when walking to her friend’s house.  It was shortly after that time that her symptoms began to appear. 

​Lyme disease is easily treated with a 3 week course of antibiotics if caught in the very early stages, but when a person has been sick as long as Rose, treatment can take months or even years. Unfortunately here in Canada Lyme disease is very controversial and doctors do not recognize or treat it, so most people have to seek treatment in other countries, which is very expensive. There are some alternative therapies available here in Canada, but just like the treatment out of country they are not covered by our health care and can end up costing many thousands of dollars.  A friend told me about “crowdfunding” so I decided to give it a try and amazingly raised $23,000!!  Now we had money, but had to decide the best treatment facility to go with.  

​After extensive research we chose a clinic in Mexico just south of Tijuana and were on our way there within a month. Between the team of doctors and specialists, both from Mexico and the U.S., their high tech labs, state of the art equipment and unlimited restrictions to treat her, all of the doctors concur that Rose was in much worse shape than we were led to believe in Canada. 

​After not being properly diagnosed or treated for 12 years, many of her body’s systems had reached dangerously low levels. Every day they all worked together to address each of these life threatening issues one step at a time. The doctors had a clear picture of what needed to be done in order to kill the Lyme and the co-infections and boost all of her body systems, too numerous to mention. We arrived back home in Canada after 15 weeks, although we would have liked to have stayed a few more weeks at the clinic in Mexico for another very important treatment therapy which I will explain, but we had run out of money.  As a matter of fact, the clinic was letting us stay and continue treatment on credit for 5 weeks and so at that time we owed them $25,000. 

​Rose had many different state of the art medical treatments while in Mexico, including 350 million stem cells, some of which that were directly implanted into her spinal column and small intestine, anti-infection Lyme program, natural killer cell therapy, gc MAF, neuropeptide therapy, bio magnetic therapy, as well as daily nutritional IV's etc.  Rose also had many, many tests done in Mexico including, MRI's, a spinal tap, an endoscopy, etc, she also had weekly blood tests and her daily IV’s would be adjusted accordingly based on the results. There were two tests that did show some abnormalities, one of which was a genetic diagnosis test that tests for 180 genetic mutations.  Rose has 46 genetic mutations that were present, while not all of them are activated.  There was a treatment available and the clinic in Mexico was ready to go ahead with it, but we already owed them $25,000 and it would be another $15,000 for the new treatment.  So once again we launched a crowdfunding campaign and raised more money and we headed back to Mexico for 2 weeks. 

​The doctors in Mexico think Rose’s Lyme disease is gone and she will be getting retested by the premier lab for Lyme disease testing in the next few weeks. In spite of this, twelve years of untreated Lyme disease has taken a major toll on her and she needs all the help she can get to rebuild her taxed body. 

​Rose has been tube feeding since 2009 with commercial formulas and we have never felt very good about it because the main ingredient in all of them is maltodextrin and the rest of the ingredients are refined and/or synthetic.  I just recently found out about a whole, REAL food tube feeding formula made in the US that ships to Canada. Please go to their website and read about it: http://functionalformularies.com/#sthash.X5AUi5WZ.... be sure to read the story of how and why the formula was developed.   

​Of course we wanted to get Rose going on this formula immediately, but tube feeding formulas are very expensive. The one she was using costs about $1000 a month, and is covered by the provincial government, whereas this amazing whole food formula is not.  

​We are about to embark on a fight to have the government cover this new one, but it could take some time to do because it is from the US and not on the list of covered formulas in British Columbia.  

​We have fought the government before and we have won!  We were the first to ever have our provincial medical plan cover treatment at the gastroparesis clinic at the University of Mississippi hospital and also to cover the cost of having Rose's gastric electrical stimulator surgically implanted in Montreal!  I am hopeful we can win this fight too! The new formula costs approximately $1300 a month, including shipping. 

​Rose is on disability and only receives $900 a month, so there is no way she can afford to pay for her own formula. I am working very limited hours because of my own health condition (Multiple Sclerosis) and we have no savings to dip into. My husband is working, but we live paycheque to paycheque.   While we are battling to have the cost of this formula covered, we wanted to get her started on this potentially lifesaving whole food formula asap and so another crowdfunding campaign was launched!  We raised enough money to order a three month supply of Liquid Hope and Rose began the slow process of transitioning to the new formula. 

​The good news is that since Rose started on Liquid Hope her blood test results have really improved! For example, her hemoglobin, iron, albumen, magnesium, kidney function and phosphorus levels are the best they have been in years and she has only just increased to three servings a day. She has also gained 3 pounds!  Can you imagine the improvement when she is up to the full 4 servings a day??!!    

​The bad news is that so far we haven't heard anything back on whether disability is going to cover the cost of the new formula and we only have enough funds to order a few more cases. It could take months to get the approval and so we really need your help!! 

 

In addition to raising money for Liquid Hope we are also want to take Rose to an Integrative medical doctor in Vancouver who comes highly recommended.  Several months ago Rose saw an endocrinologist and had extensive hormone testing as well as a bone density scan.  It was suspected that her hormone levels would be totally out of whack due to her extremely low body weight for so many years and considering she hasn’t menstruated since she was 14 years old. It turns out that some of her hormone levels are so low they can’t even be measured on the blood tests!  Rose also has the lowest bone density that the endocrinologist has ever seen which means she has severe osteoporosis.  Because Rose is so young, the endocrinologist did not feel comfortable putting her on synthetic hormones and suggested bio-identical hormone replacement therapy (BHRT) instead, but explained that the treatment is not covered by MSP and is very expensive. Here is a brief description of what BHRT is

The term “bio-identical hormones” was coined to describe a hormone that is the exact same molecular structure as the hormone naturally produced by your body. It is “Mother Nature’s” design as opposed to the synthetic hormones created by pharmaceutical companies. A bio-identical hormone may be synthesized in a lab, but care is taken to create a molecule that is identical in structure to the natural form of the hormone. Substrates such as soy or wild yam are used because they happen to contain substances that are easily changed into the desired bio-identical structures.

The integrative MD that we want Rose to see is an expert in BHRT as well as many other therapies that could benefit Rose as she tries to rebuild her health and we want to be able to go ahead and try everything she believes could help. This of course could be very expensive.

​Our goal is set at $8,000. Please donate what you can and help us make 2015 the year that things finally turn around for Rose!! 


Time is of the essence. This is literally a matter of life and death.



​Below is a comparison of the formula the government will pay for that Rose was using since 2009 and Liquid Hope.  After looking at the difference in the ingredients of both, I think it will be pretty obvious why she NEEDS to switch permanently to Liquid Hope.    

​Liquid Hope ingredients: 

​Filtered water, organic garbanzo beans, organic green peas, organic carrots, organic whole grain brown rice, organic whole grain rice protein, organic flax oil, organic sprouted quinoa, organic sweet potato, organic broccoli, organic almond butter, organic kale, organic garlic, organic turmeric, organic rosemary, organic ginger, organic wakame (seaweed), vitamin blend and mineral blend (all natural for high absorption)

Peptamin AF ingredients:

Water, Maltodextrin, Enzymatically Hydrolyzed Whey Protein (from Milk), Medium Chain Triglycerides (from Coconut and/or Palm Kernel Oil), and less than 2% of Cornstarch, Refined Fish Oil (Anchovy, Sardine), Soybean Oil, Fructooligosaccharides (Soluble Fiber), Soy Lecithin, Inulin (Soluble Fiber From Chicory) vitamin and mineral blend (mostly synthetic)
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