Aly & Brayden's Lyme Medical Fund
Donation protected
Hello Everyone!
I am making this campaign for my daughter, who has been through hell and back the past 6 months. My daughters name is Alison Rose and we are from a suburb of Chicago, Illinois. I want to start by saying that this is very difficult for not only Aly but myself as well. Aly has exhausted all options and depleted what money she has worked hard to save in her 25 years of life. My daughter is a tough cookie and will never admit when she needs help but I am here to tell you that this time, she needs help (emotionally, mentally and financially).
Last summer, Aly became very very ill during late June/Early July. She was extremely sick with a mid-summer flu/cold and at the time we thought nothing of it. However, it lingered and really took a toll on her for about 3 weeks. After that incident, she was constantly sick on and off. She would have a sinus infection for 2 weeks, have a week break and then another one (or the flu for another 2 weeks). She was miserable, but she managed. She was able to continue to work, take care of her son (who was just over 3 years old at the time) and graduate with two degrees from college. It wasn't until the fall/winter of 2014 that she started exhibiting odd and troubling symptoms, that we started realizing something wasn't right.
In January of 2015, I received a panicked called late at night from Aly. The whole left side of her body had gone numb and she was having a hard time moving. She also had swelling on the left side and was experiencing an odd rash. I immediately picked up my grandson and Aly was rushed to the hospital. To our surprise, they dismissed her as having a panic attack and anxiety. However, my daughter has never been an anxious person and this was completely out of character for her. After her first hospital stay, things seemed to calm down. But fast forward a month to the end of February 2015, the same thing happened, except on the right side of her body and now unfortunately her heart was acting up.
She visited the ER with similar symptoms but the ER staff could not get her heart rate under 110bpm. Long story short, after being tested for clots, thyroid issues, heart issues, x-rays, ct scans and a 9 hour stay in the hospital she was released with sinus tachycardia from unknown causes. Her nightmare didn't end there, it only got worse. Between the months of January and March 2015 she has been in the ER/hospital 7+ times. She has had over 60 vials of blood drawn. Aly has had CT scans of her head, neck, chest, abdomen and brain (a total of 6 scans), 3 MRI's, 2 MRA's, EMG AND NVC's as well as 2 - 30 day holter monitors. She has seen 7 different ER doctors, a cardiologist, a neurologist, a gastroenterologist and a psychiatrist. I spent nights watching my daughter (who was once this ball of italian attitude) cry herself to sleep in pain and fear. I cannot tell you how many times I heard her crying to her son telling him "if something happens to mommy, know I'll always love you and always be with you". I cannot count how many times she told me "mom, I don't want to die, I don't want to have a heart attack or stroke". It breaks my heart as her mother I cannot take her pain or fears away.
When test after test came back "normal" and after being told it's all in her head, she finally took charge of her health. She began researching her odd array of strange and troubling symptoms. This research is what brought her to the possibility of ALS or Lyme disease. However, after her clean EMG/NCV ALS was ruled out. Which left lyme disease. Her neurologist gave her the lyme screening - ELISA test but it came back "non-reactive" (at the time we were NOT aware that ELISA tests are only 30% accurate and MISS OVER 70% of active lyme cases)and Aly was told to "get that idea out of her head". Aly was the one who researched and found that certain doctors called LLMDs (lyme literate medical doctors) are technically the only people really aware of the severity of lyme disease and qualified to treat it. Aly was able to find an LLMD in Indiana, about an hour and a half away from us, that was willing to sign off on the orders to test her through a special lab in California called IGenex. About 2 1/2 weeks later she got the call we've been waiting for. She tested reactive on at least 5 bands of the western blot IGG/IGM test. She has lyme disease.
We quickly learned how controversial and expensive this disease is in the medical world. Unfortunately for lyme patients, like my daughter, insurance does NOT cover treatment. No if, ands or buts about it. They do NOT recognize lyme as a real disease. Aly has tried everything to get the insurance company to help, to no success. The reason Lyme is such a taboo topic is lack of education. The CDC refuses to believe there is anything other than acute lyme, however when the disease goes untreated, the bacteria spreads throughout the body and becomes a chronic or late stage disease. But not in the eyes of the CDC and insurance companies. Unfortuantely there is no cure for lyme disease but there is the possibility to put the disease into remission.
All of the testing for Aly has cost over $60,000 just to determine what she does NOT have and now we know what she DOES have and we cannot get any insurance coverage. Since testing positive, Aly has found two doctors that we have to travel to in the state of Wisconsin (which Aly was not happy about, seeing that she is a HUGEEEE Chicago Bears fan and found out one of her doctors is a Packers fan, haha!!). One is 4 hours away and the other is 2 hours away. Both of which do NOT accept insurance. Aly has already spent over $2,000 in one month of seeing both doctors and getting necessary medications and herbs to begin her journey to being healed. Aly has been able to take care of the majority of her treatment but with her health deteriorating, she has had to cut her hours at work and who knows how long she'll be able to work for (she has about 90% of symptoms on a list of over 300 symptoms). My daughter barely makes enough to cover her son's daycare tuition alone. With each LLMD/LLND visit being anywhere from $200-$425 per check up and cost of medication anywhere from $1,000-$1,500 a month - Aly is in a really tough situation. As much as I wish I could, I am not in a position to help financially as I am just making ends meet myself.
Aly has always been a fighter and is really fighting for her life right now. Lyme has been known to be fatal and this is something that has scared her from day 1. She would be devastated if she had to stop treatments and go back to being physically and emotionally debilitated every day. Aly has so many goals and dreams she'd like to achieve. She also has my sweet grandson to raise and watch grow up.
With that being said, I'm asking for help. Any help, please. Even if financial help isn't an option, just sharing her story would be a great help. Unfortunately over 300,000 will contract Lyme disease each year and it is only getting worse. Please help my daughter regain her health and life again.
ALL DONATIONS WILL BE GOING TO MEDICAL/TRAVEL EXPENSES DIRECTLY RELATED TO HER CARE.
Thank you from the bottom of my heart. God bless.
-Deb Diaferia
(Aly's mom)
Here are some links below in regards to lyme and information on the disease/treatment.
www.lymedisease.org
www.cangetbetter.com/symptom-listwww.ilads.org
www.lymedieaseassociation.org
I am making this campaign for my daughter, who has been through hell and back the past 6 months. My daughters name is Alison Rose and we are from a suburb of Chicago, Illinois. I want to start by saying that this is very difficult for not only Aly but myself as well. Aly has exhausted all options and depleted what money she has worked hard to save in her 25 years of life. My daughter is a tough cookie and will never admit when she needs help but I am here to tell you that this time, she needs help (emotionally, mentally and financially).
Last summer, Aly became very very ill during late June/Early July. She was extremely sick with a mid-summer flu/cold and at the time we thought nothing of it. However, it lingered and really took a toll on her for about 3 weeks. After that incident, she was constantly sick on and off. She would have a sinus infection for 2 weeks, have a week break and then another one (or the flu for another 2 weeks). She was miserable, but she managed. She was able to continue to work, take care of her son (who was just over 3 years old at the time) and graduate with two degrees from college. It wasn't until the fall/winter of 2014 that she started exhibiting odd and troubling symptoms, that we started realizing something wasn't right.
In January of 2015, I received a panicked called late at night from Aly. The whole left side of her body had gone numb and she was having a hard time moving. She also had swelling on the left side and was experiencing an odd rash. I immediately picked up my grandson and Aly was rushed to the hospital. To our surprise, they dismissed her as having a panic attack and anxiety. However, my daughter has never been an anxious person and this was completely out of character for her. After her first hospital stay, things seemed to calm down. But fast forward a month to the end of February 2015, the same thing happened, except on the right side of her body and now unfortunately her heart was acting up.
She visited the ER with similar symptoms but the ER staff could not get her heart rate under 110bpm. Long story short, after being tested for clots, thyroid issues, heart issues, x-rays, ct scans and a 9 hour stay in the hospital she was released with sinus tachycardia from unknown causes. Her nightmare didn't end there, it only got worse. Between the months of January and March 2015 she has been in the ER/hospital 7+ times. She has had over 60 vials of blood drawn. Aly has had CT scans of her head, neck, chest, abdomen and brain (a total of 6 scans), 3 MRI's, 2 MRA's, EMG AND NVC's as well as 2 - 30 day holter monitors. She has seen 7 different ER doctors, a cardiologist, a neurologist, a gastroenterologist and a psychiatrist. I spent nights watching my daughter (who was once this ball of italian attitude) cry herself to sleep in pain and fear. I cannot tell you how many times I heard her crying to her son telling him "if something happens to mommy, know I'll always love you and always be with you". I cannot count how many times she told me "mom, I don't want to die, I don't want to have a heart attack or stroke". It breaks my heart as her mother I cannot take her pain or fears away.
When test after test came back "normal" and after being told it's all in her head, she finally took charge of her health. She began researching her odd array of strange and troubling symptoms. This research is what brought her to the possibility of ALS or Lyme disease. However, after her clean EMG/NCV ALS was ruled out. Which left lyme disease. Her neurologist gave her the lyme screening - ELISA test but it came back "non-reactive" (at the time we were NOT aware that ELISA tests are only 30% accurate and MISS OVER 70% of active lyme cases)and Aly was told to "get that idea out of her head". Aly was the one who researched and found that certain doctors called LLMDs (lyme literate medical doctors) are technically the only people really aware of the severity of lyme disease and qualified to treat it. Aly was able to find an LLMD in Indiana, about an hour and a half away from us, that was willing to sign off on the orders to test her through a special lab in California called IGenex. About 2 1/2 weeks later she got the call we've been waiting for. She tested reactive on at least 5 bands of the western blot IGG/IGM test. She has lyme disease.
We quickly learned how controversial and expensive this disease is in the medical world. Unfortunately for lyme patients, like my daughter, insurance does NOT cover treatment. No if, ands or buts about it. They do NOT recognize lyme as a real disease. Aly has tried everything to get the insurance company to help, to no success. The reason Lyme is such a taboo topic is lack of education. The CDC refuses to believe there is anything other than acute lyme, however when the disease goes untreated, the bacteria spreads throughout the body and becomes a chronic or late stage disease. But not in the eyes of the CDC and insurance companies. Unfortuantely there is no cure for lyme disease but there is the possibility to put the disease into remission.
All of the testing for Aly has cost over $60,000 just to determine what she does NOT have and now we know what she DOES have and we cannot get any insurance coverage. Since testing positive, Aly has found two doctors that we have to travel to in the state of Wisconsin (which Aly was not happy about, seeing that she is a HUGEEEE Chicago Bears fan and found out one of her doctors is a Packers fan, haha!!). One is 4 hours away and the other is 2 hours away. Both of which do NOT accept insurance. Aly has already spent over $2,000 in one month of seeing both doctors and getting necessary medications and herbs to begin her journey to being healed. Aly has been able to take care of the majority of her treatment but with her health deteriorating, she has had to cut her hours at work and who knows how long she'll be able to work for (she has about 90% of symptoms on a list of over 300 symptoms). My daughter barely makes enough to cover her son's daycare tuition alone. With each LLMD/LLND visit being anywhere from $200-$425 per check up and cost of medication anywhere from $1,000-$1,500 a month - Aly is in a really tough situation. As much as I wish I could, I am not in a position to help financially as I am just making ends meet myself.
Aly has always been a fighter and is really fighting for her life right now. Lyme has been known to be fatal and this is something that has scared her from day 1. She would be devastated if she had to stop treatments and go back to being physically and emotionally debilitated every day. Aly has so many goals and dreams she'd like to achieve. She also has my sweet grandson to raise and watch grow up.
With that being said, I'm asking for help. Any help, please. Even if financial help isn't an option, just sharing her story would be a great help. Unfortunately over 300,000 will contract Lyme disease each year and it is only getting worse. Please help my daughter regain her health and life again.
ALL DONATIONS WILL BE GOING TO MEDICAL/TRAVEL EXPENSES DIRECTLY RELATED TO HER CARE.
Thank you from the bottom of my heart. God bless.
-Deb Diaferia
(Aly's mom)
Here are some links below in regards to lyme and information on the disease/treatment.
www.lymedisease.org
www.cangetbetter.com/symptom-listwww.ilads.org
www.lymedieaseassociation.org
Organizer and beneficiary
Debi Diaferia
Organizer
Streamwood, IL
Alison Diaferia
Beneficiary
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