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Andrea's Medical Treatment Fund

$34,630 of $40,000 goal

Raised by 306 people in 6 months
Created August 6, 2017
Gary Bain
on behalf of Craig or Andrea Peterson
Our daughter, Andrea, is suffering from chronic Lyme disease. Other than antibiotics, the only FDA approved treatment, which she has been advised would not help because the disease had progressed too far before she was diagnosed, there is little the established medical community can or will do.  Lyme is not a well understood disease and support from the medcal establishment has been meager at best. There are alternative treatments available however none of these are covered by insurance.  Since nobody seems to know to know how to treat Lyme there are no FDA approved protocols and so there is no medical insurance coverage for "unapproved" treatments.  One treatment that seems to be promising is undergoing hyperbaric chamber treatment as the Lyme bacteria cannot live in a high oxygen environment.  Unfortunately this is not covered by insurance either because it is not "FDA Approved".  We have located a chamber available in Duluth and Andrea wants to start treatment as soon as possible. There is, also a doctor at Johns Hopkins Medical Center in Maryland who has had some success but due to the cost of traveling there, hotels for an unknown length of time and with no medical insurance coverage for the treatment of Lyme, she does not have the ability or financial where with all to travel there for treatment.
 
As the disease progresses she is becoming more and more incapacitated and we are extremely worried about her very survival if she does not get  some kind of viable treatment.  She has lost a tremendous amount of weight (think skeletal), is walking with a limp and sometimes can barely walk, needs to nap several times a day  and has little energy to attend to the daily needs of life although she soldiers on as best she can.  The photo in no way resembles what she looks like today. 

 To give you some insight into what kind of people she and her husband Craig are - when our son, a 38 year old single father, died unexpectedly on Christmas Eve, 2010,  she and her husband immediately and selflessly volunteered to adopt our son's two boys who where five and seven at the time. They already had four children so this was not an easy thing to do from either a family integration, legal or financial standpoint. The boys have developed into smart, active, loved members of the family due to the caring, loving parentage they have received as well as from their brothers and sisters.  They are truly wonderful parents and it is a beautiful family in every sense of the word. That Andrea is now infected by this terrible disease is a tragedy in so many ways.
   
Other than funding for medical treatment we do not need other assistance, at least not at this time.  The family has received substantial help from their large circle of friends in Duluth. Her husband and the children have assumed responsibility for all the things she can no longer do. They have been wonderful. All of us, her mother and I, her father and step-mother, who live in Portland, Oregon and Craig's mother and father who live in Duluth provide what help and financial assistance we can but the financial assistance we can provide as retirees is not unlimited and not nearly enough to cover the cost of the treatments she needs.  We are doing all we can but it is just not enough. 

Funding is needed immediately as treatment is critcal and needs to start as soon as funding is available. Please send on this campaign to your contacts whether or not you donate.  Please believe me, we wouldn't be asking for help if we didn't need it. It is difficult to have to ask for help and especially to have to ask for money.
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Latest update from Craig after visit with Rheumatologist yesterday:

"Andrea and I met with Dr Raymond Hausch today 2-15-18. This is what I took from the visit.

Dr. Hausch is very nice and he communicates well. We did not really learn a whole lot new or surprising other than the possibility of stem cell replacement which I will discuss later. He asked all about what we have tried so far and was interested in immunotherapy but until it is proven with long term studies, it is not something that he can offer or support. We totally understood and were not surprised by his response. Andrea was calm, articulate and knowledgeable in our discussion and I think Dr. Hausch was impressed.

He told us that Andrea has all of the symptoms of scleroderma and that the prognosis is grim. He said that those who survive the first 5 years of the disease have a chance of living longer but he said not to expect to live to 70 or 80 even if things stabilize-which is unlikely in his estimation. Although we have read all of this before, it was still scary and hard to accept. He told us about how rheumatologists treat scleroderma which is basically experimenting with a variety of drugs (immunosuppressants, steroids, etc.) that can help with the symptoms but can also have bad side effects. Some of the drugs are used for chemotherapy, rheumatoid arthritis, etc. He said that he would not want to take these drugs and he would not want his wife to take these drugs but that is basically all they can do at this point. Dr. Hausch also said that some universities have conducted research studies by doing stem cell replacement in scleroderma patients. He said that it is possible that Andrea could be a candidate for this type of experimental treatment but he is not sure. He thinks that they might be doing this at the University of Michigan and maybe Milwaukee or Chicago but not at Mayo or U of M. Stem cell replacement would be a major, risk-filled procedure that would mean weeks of hospitalization and there is no guarantee of good results. His last patient who tried stem cell replacement got better for a while and then died of leukemia. Also, he said it would be very expensive and difficult to convince the health insurance company to pay the bills. With that said, we are looking into this possibility and Dr. Hausch is willing to help.

Obviously, Andrea does not want to accept that she may die soon so she is both sad and scared and determined to beat the odds by seeking other possibilities. She is experiencing so much pain and frustration but is still incredibly sharp and has an amazing spirit. This all seems surreal to me. I felt like I was in a movie getting bad news from a doctor. It’s going to be a tough road ahead. I’ve basically decided at this point that I just want to help Andrea and the kids enjoy life as much as possible, not sweat the small stuff, and remain positive, optimistic, and resilient. We continue to receive incredible amounts of love and support from friends and family. This kindness is humbling and inspiring.

-Craig"

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It's been a while since an update the reason being that there is no new news. No change in Andrea's condition - maybe a little worse. She is still on LDI therapy and has an appointment with a rheumatologist in mid-February for the possible treatment of her scleroderma issue. Even if there is a treatment there appears to be no cure for scleroderma, just symptom management. It is so frustrating not being able to find anyone who seems to be able to provide a viable treatment. Lyme literate doctors say that scleroderma can be a symptom of Lyme as Lyme imitates many other diseases. A large part of the conventional medical establishment doesn't even recognize Lyme Disease although the CDC does. The LDI doctor says it will be "at least" six weeks before we see any results. We've got about a week to go but so far we have not seen any positive results. One the one hand the LDI treatment is to build up the immune system and on the other the rheumatologist will probably prescribe a medicine that inhibits the immune system. It is so very, very frustrating. I will send another update after she sees the rheumatologist. Again, and I cannot say it enough, thank you all for your support.
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Hello Everyone,

Andrea was admitted to the hospital in Duluth yesterday (12/7/17) for extensive medical testing. We were expecting her to have some tests done yesterday but then Andrea told us that this was a pre-testing appointment. After she got to the hospital the doctor decided that the tests should be done immediately and the fastest way to do that was to have her admitted. She has a new internal medicine doctor and she (the doctor) wants to run nearly every test known to man to find out what is going on. We expect she will be in the hospital for at least a couple of days. Her immunology doctor has to wait until all of the testing is complete before he starts her on the new protocol. I'll post again when we know more. Thank you all for you thoughts, prayers and support.

Barbara and Gary
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Well, things are not going well. Andrea had blood tests done while in the emergency room in Duluth and the findings were very high liver enzyme levels, enlarged lymph nodes and she has an enlarged heart. The doctors are working out a new treatment plan. She starts a new course of immunotherapy on December 8th and we continue to hope and pray that we seem some improvement. I will keep you posted on her status. Thank you, Gary and Barbara
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$34,630 of $40,000 goal

Raised by 306 people in 6 months
Created August 6, 2017
Gary Bain
on behalf of Craig or Andrea Peterson
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