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Leannes Chiari

$300 of $1,000
30%
6 donations
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This fundraiser ended on 02/07/12

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The family and friends of Leanne Zarosley are uniting to raise money to help with her battle against her Chiari. Please show your support!

My name is Leanne and I suffer from 2 genetic conditions; I have Ehlers-Danlose and a Chiari Malformation. The Ehlers-Danlose is a connective tissue disorder that affects the joints, muscles, skin, and heart. It causes easy bruising and easy bleeding. It causes my joints to very lax, which in turn, causes very tight and sore muscles. Researches believe that when an individual has Ehlers-Danlose, that they also are quite often found to have a Chiari Malformation. A Chiari Malformation is basically a brain herniation; the cerebellum is not enclosed in the skull and instead is descending down onto the spinal cord. The symptoms of a Chiari Malformation vary from person to person, but the list of possible symptoms is a long one. Not every individual that has a Chiari needs surgery. Some individuals go their whole life without experiencing any symptoms and others have almost every symptom on the list. Researchers believe that one is born with a Chiari and that symptoms for most people do not start until a person is in their 30’s. I am 35 (turning 36 in less than 2 weeks) and my symptoms started just a little over 2 years ago.

For me, my first symptom was one if I turned my head and neck just so, I could hear and feel a grinding and popping in my neck. I did have mild headaches, but they weren’t bad enough for me to put them together with grinding I heard in my neck. I went to see an orthopedic specialist and he told me neck was fine, but that he saw a “mild” Chiari Malformation. A Chiari is considered mild when the brain has herniated less than 5mm. I have to say, I was not surprised; most people probably don’t know what a Chiari is, but I had a friend who was a nurse practitioner and she has a Chiari. I of course, didn’t know what a Chiari was until she mentioned it and then I started researching it. Less than 2 months after I had the MRI, I went to see a neurosurgeon. I was told that it could not be operated on because of the minimal herniation. I also did not have many symptoms at the time. A few months later I decided to see another neurosurgeon. He did more scans and the Chiari was slightly bigger at 6mm. I was having frequent headaches then and ringing in my ears. I was also experiencing eye floaters, which may be common, but are also attributed to Chiari Malformations.

After that point, some things were changing in my personal life. Surgery took a backseat because I was going through a divorce. It was after this point that the symptoms really started increasing in severity and number. I had a new relationship and had moved from Illinois to Wisconsin with my 2 girls in tow. I spent approximately the next year just getting by day to day. There were so many new symptoms popping up here and there. My new husband noticed that my speech started to slur when I got tired and my gait was not entirely steady when standing from a seated position. I started sleeping more and the soreness in my neck muscles was excruciating. My mood swings became larger and larger and I know I was (am) hard to live with. I finally had another MRI done with my new GP and was told that the brain herniation was now 8.5mm. No wonder my head hurt so bad along with all the other symptoms. It seemed a new symptom was cropping up every day! Just weeks after we were married, we went to see the doc. We were told by him that the herniation at 10mm.I told him the new symptoms that now included numbness and loss of circulation in my hands and feet when doing simple things like talking on the phone, or from sitting. I’ve lost my gag reflex in my throat, and now have a constant feeling to urinate when I don't need to.

My new husband and I were horrified as the doctor started doing the neurology exam. The doctor told me to close my eyes and touch the tip of my nose and my husband informed me later that I touched the bridge of my nose! When he used the reflex hammer on my left leg, it didn’t move….AT ALL! He then took the bottom of the reflex hammer that has the metal end and scraped the bottom of my left foot, when he did this, my toes did not move at all either! This was very startling! A good hour later, we were scheduling a surgery date. The surgery was a good four months away, so now we waited. And the day is here. I will undergo Decompression surgery Dec. 14th.

In the meantime, the headaches were getting unbearable and nausea was setting in. I was now rendered unable to work. This now proved to be a large burden on our new family of 6. This Chiari makes me unable to stay awake for just a few hours. Yet I can't sleep for more than a few hours at a time either. We struggle every month to make enough money to buy food or keep our utilities running. All of this hardship also causes a strain on our new marriage. I love my husband and I am pretty sure he is the best one there is, but even he has his limits. He describes it as if it was like living with someone who has a hazy form of Alzheimer’s. Oh yes, and that is another thing, my memory! My short-term memory has gone. I now cannot watch a TV program without having to pause and ask him questions about the show because I can’t remember things from the beginning! All of these things added together, make it really hard to just live normally!

I am frightened that while I’m recovering that we will get an eviction notice or have the car taken away! I cannot have either of these things happen! My husband and I are not too proud to ask for help, for we know that everyone needs help sometimes. Those of us in ill health know this to be a fact. Just living in fear every day of not being able to make ends meet until I recover and find another job is horrifying. We have tried every which way to get assistance and I am told that I do not qualify because I don’t have MS or terminal cancer. My sweet, caring, loving, hard-working husband is hoping to raise enough money to just get by until I’m recovered; because right now, we are doing less than getting by. God Bless you for caring...

You can donate by using this site or by sending donations directly to:

Leannes Chiari Fund
UW Credit Union
PO Box 44963
Madison, WI 53744-4963

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