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Megan, 21, was diagnosed with an extremely rare and unusually fatal illness called Leimerre's Syndrome. Any help would be appreciated.

On September 19, 2010 our feisty, hardworking, spirited, loveable Megan came home from a two-day, end of the year celebration at Jefferson Speedway feeling really sick. I was positive she had strep throat. The next morning we went to see our family doctor and after one look at her they sent her to the Emergency Room. At the ER, they diagnosed her with extreme dehydration and mono, which she already had during her senior year of high school! I thought, only my child could get mono twice! She came home from the ER feeling much better, but by Tuesday September 21st (her golden birthday) she started to go downhill. Wednesday and Thursday were worse, and by Friday morning, with a fever of 102, she was almost non-responsive. She hadn’t spoken in three days, hadn’t eaten for a week, and hadn’t drank or taken any medicine for two days. I took her back to see the family doctor (Dr. Hardy) and after looking Megan over, she said that Megan was very sick and needed to be admitted to the hospital. I got worried, but had no idea what was about to come!
Dr. Agnew was her admitting doctor and I believe she was Megan’s saving grace! Dr. Agnew did some initial tests. I met with Dr. Agnew and she explained to me that Megan was very, very sick and it could be several different things. Her fever was over 104 degrees and her head, ear, and throat were severely hurting her, but they couldn’t give her anything for the pain until they figured out what she had. Dr. Agnew felt they needed to do a spinal tap because her symptoms looked like Meningitis and it was currently running around Waukesha. While Megan was getting her spinal tap, I called my family and explained Megan’s condition and said I would keep them updated. Megan came back from her spinal tap test and was lying in the bed. My friend, Cari, who had came to support me during this, asked me “What happened to Megan’s head?” I said, “What do you mean?” Cari asked Megan to turn her head to the side. The side that Megan had been complaining about for hours. And what I saw was the scariest, craziest thing that I have ever seen! When Megan turned her head, it looked like someone had stuck a golf ball in the side of her temple!!! Cari and I freaked out and ran and got the nurse who in turn took one look at it and ran for the doctor. Dr. Agnew came in and looked at Megan’s bulging head and that’s when everything changed!
Dr. Agnew immediately got on the phone and started calling a number of doctors, specifically ENT (ears, nose, throat) doctors and told me that Megan was too sick and needed to be moved to the Intensive Care Unit at Waukesha Memorial Hospital. While they moved her into ICU, she explained to me that Megan could have several things wrong with her. She could have a viral infection on top of the mono or it could be a kidney or bladder infection. She still leaned toward Meningitis since the test results had not come back yet, but needed to explain another possibility. It could be a really rare illness called Leimerre’s Syndrome. She very much doubted it because she had never had a patient with that disease and the hospital had never had a case. She wanted to prepare me for that possibility because many of Megan’s symptoms pointed to the Leimerre’s illness. Leimerre’s Syndrome is an extremely rare illness, with only 160 cases in the last 100 years. It is a blood clot filled with a horrible bacteria that is located in the jugular vein and sends out smaller clots throughout your organs and joints. Dr. Agnew said they were going to do a CAT scan on Megan. The CAT scan would rule out Leimerre’s and figure out what was going on with her, while we waited for the Meningitis test and other blood tests results to return.
I used the time to call my family and update them on what was going on; that Megan was in ICU, the possible things going on with her and that they all should be ready to come if needed. Jordain, Megan’s younger sister, had told me that Megan’s dad and Diane, her step mother, were already on their way. She also looked up Leimerre’s on the internet while I was talking with her and she read that there was only a 4% chance of survival! Even though this news scared me, and her, I told her that Dr. Agnew said she really didn’t think that Megan had it because it was so rare. I went into Megan’s room after she arrived and had finished the CAT scan and Mark, my husband and Megan’s stepfather, said that Dr. Agnew wanted to talk with me. I stepped out of the room and I will never forget what happened next!
I had started to walk down the hall of the ICU area and looked up and saw Dr. Agnew’s face and she just started to shake her head back and forth and I mouthed “Leimerre’s?”, and she whispered “Yes”. I immediately collapsed into the floor hysterically crying and Dr. Agnew and my husband picked me up and put me into a wheel chair. Dr. Agnew knelt down and asked me, “Who can I call of your family and friends because they need to come in tonight in case…” she never did finish that sentence. I couldn’t believe a doctor had just told me that Megan may not make it through the night. I never thought I’d hear those words said to me, and I never wish for any mother to go through that. I cried for a few more moments and all of a sudden I got an overwhelming feeling that I needed to be with my daughter. I shook myself off, said “I gotta go, I gotta go and see her right now!” I went into her room, pulled the chair up to her bed, took her hands in mine and I cried softly to myself. Megan with her eyes closed and scratchy whisper said to me, “Why are ya crying?” I said, “Megan, you are very, very sick and I’m really worried about ya.” She said, “Ah!, I’m not gonna die! Just give me some sweet tea and send me home!” And from that moment on, I knew Megan would be alright. Feisty, stubborn Megan! She just wasn’t going to let anything keep her down. And she didn’t.
Megan has been so strong with everything that has been thrown her way. There has been: 5 days in ICU, 8 days in a normal hospital room, two I.V.’s, a PICC line, many CAT scans and MRIs, five specialists, 15 intravenous and oral antibiotics at one time, leg jumping beans (lol), a home health nurse, and many, many doctors and lab appointments, plus shots in the stomach twice a day, going to and from urgent care and yet she still perseveres. She has good days and bad days, trying to figure out what is too much. But she is getting stronger and stronger each day.
We are so touched from all the amazing support and help from all our family and friends. The out pouring of love, prayers and thoughts have been so amazing. We could not have done it without you!
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