Here is the story from our first campaign:
I would like to start by saying that I tried really hard to keep this as short as possible. Even though it appears very long, I have condensed the story and I could have written several more pages. My name is Tani and my daughter Rose was a healthy, normal girl until things started to change when she was fourteen years old. 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 and 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.” I had to break down the word to decipher what it meant, and found it 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 moniter 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 (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 the picture above Rose looks very tiny and was about 90 pounds and now is she is only 73 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. She had the surgery and after a month of horrible complications and infections we came home.
It has been two years now and unfortunately Rose is still unable to eat and still tube feeds for nutrition. We have tried to get help, but doctors here just don’t have experience with this type of problem.
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
This past six months Rose has been literally fading way in front of our very eyes. Even though she is tube feeding the same amount of calories and taking a multitude of supplements, her blood tests are worse and worse to the point of now going for iron infusions and probably very soon, blood transfusions. She is losing weight in spite of getting more than enough calories and as I mentioned, is only 73 pounds. In December of this past year she woke up one day with an excruciating headache that hasn’t gone away and she is now taking narcotic painkillers every 4 hours around the clock to barely keep the pain at bay and no one can figure out what is going on. She has had a cat scan for the headaches which came back as normal and is scheduled for an MRI.
About a month 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 last week as 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 this past week I have found out that Lyme disease can attack the entire digestive system and cause among other things, not only gastroparesis, but also malabsorption. It also commonly causes severe headaches!
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 2 week course of antibiotics if caught in the early stages. 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 the US, which is very expensive. There are some alternative therapies available here in Canada, but just like the treatment in the US they are not covered by our health care and can end up costing thousands of dollars. If you are in the Grand Forks, BC area and want to donate, you can also go to the Grand Forks Credit Union and make a deposit to the "Rose Fund."
I am not working right now and am very limited in the type of work I can do because of my own health condition (Multiple Sclerosis) and we have no savings to dip into. My husband is working, but we live paycheck to paycheck. We rent and have no assets we can sell. Any donation, no matter how small helps and we want to thank you in advance for your generous support. Time is of the essence, because Lyme disease will continue to attack her body relentlessly and we have to ask for help in order to access the treatment needed to save our daughter’s life.
Our current campaign:
As most of you know, we are now in Mexico where Rose is undergoing treatment thanks to all of your generous donations.
The plan was to be here for 3 weeks, but now here we are at the end of week 2 already!
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 is in much worse shape than we were led to believe in Canada.
After not being properly diagnosed and treated for 12 years, many of her body’s systems have reached dangerously low levels.
Every day they all work together to address each of these life threatening issues one step at a time and she is beginning to respond to these treatments, but she has a long way to go.
These doctors have a clear picture of what needs to be done in order to kill the Lyme and the co-infections and boost all of her body systems, too numerous to mention, but they are asking for more time.
More time means more money and we now find ourselves having to reach out again and ask for your continuing support to keep Rose in the best possible place she could be right now receiving the best possible care available. We have no choice but to ask those who are able, to save our beautiful daughter who is trying so hard to hold on to some kind of hope for a better life further down the road. Please share this with as many people as you can as soon as you can. Thank you.
