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Syrinx Warriers

Member Of Charity Heilbrun and Family

Welcome to my fundraising page! Click the donate link to sponsor my efforts in meeting my fundraising goal My goal is to raise money for Syringomyelia / Chiari Malformation awareness and to find a cure!! All the proceedes to directly to the American Syringomyelia Alliance Project. ASAP.org

Visit and like  our facebook page, we also have syringomyelia awareness t shirts, hoodies and more!! All proceeds will go to this fundraiser!!

http://www.facebook.com/SyringomyeliaAwarenessAndFundraising

 

 To make a donation click the sponser link to the left. No donation is too small, every dollar help!!!

 

     When I was sixteen years old, I started having severe back pain. I was to doctor after doctor. After reviewing my MRI I was told I had degenerative disc disease. For the next ten years, I delt with it. I had strange things happen, like my hand or foot would suddenly go numb or tingle horribly. It was annoying, however it only lasted a few seconds to a few minutes then went away. As I got older, I would get severe stabbing pains. For instance one day my foot hurt so horribly bad, I couldn't even walk on it. I thought for sure it was broken. I made a doctor apt for the next day, but when I woke up the next morning it was gone. Then I started getting the most horrible migraines. The type you wake up up with and literally can not move. If you dare to move, then you will be physcially ill. To make a long story short, I had a variety of symptoms that would just pop up, then suddenly go away. I felt like I was loosing my mind, none of this made any sense what so ever. How could I go to the doctor for a pain or symptom that was no longer there.

    I had a horrible time with all 3 of my pregnancies, and ended up on bedrest at an early stage in each. With my youngest daughter I had to have a planned c -section. I went into the hospital that am to get the epidural so that they could preform the c-section. They had a terrible time getting the epidural in, and it was not due to an inexperienced anthestesiologist. I was a nurse at the time, knew him, and he was the best. However. After he injected the medication, only part of me was numb. I could still feel part of my feet, side and hand. I said to him " I can move my toes!!" He replied " No you can't, you just think you can." So, I wiggled my toes to his amazement. He exclaimed " that's not right!!!". SO he gave me another does of the medication. This time, i felt more comfortable, I felt like I was numb. Evidentally, at least at that time, they some sort of shock machine that they go over your belly with where they are going to make the inscision, to ensure that you are numb. All the sudden I felt this horrible shock on my belly and screamed, part in fear and part in pain. Everyone in the or jumped.. astonished that i was STILL not numb. So once again, more medicine. My baby girl Christyn, was born and all was well. The reason the epidural was not working on me was that I have syringomyelia from c5 to L1 and no one knew it yet.

   About a year after she was born, the phantom pains I had were worse than ever. I would wake up with my neck was so stiff I could hardly move it. I was in the doctors office just about everyday. Every one threw there hands up in the air, and basically told me I was a hypochondriac. Finally they put me in the hospital. Again to no avail. They even did an MRI of my spine and said everything was fine.

  I was persistant however, and knew something was wrong. A few days after being discharged, I went back to my doctor's office in tears and in severe pain, were I could not sit, lay down, anything. The doctor was disgusted threw my a mild myscle relaxer and said If I wasn't better by Monday they would send me for an epidural. So depressed, and in angony I went home.

later that night I was sitting at my moms still in agony, when suddently my legs started to go numb. I was rushed to the er where a panicked dr used a pin to test the feeling in my legs. He then said I am calling for an ambulancem you are going to Pittsburgh. As soon as I arrived I was whisked away to an MRI.

A few minutes later, an army of white coats came into my room, where the head doctor said " We know what is wrong". " You have syringomyelia" I said " I have syrin WHAT?"  He went on to explain that i had it extensively from my C5 to L1. I asked " so what do we do" thinking I would be cures with a couple pills. He then looked at me and said " there is no cure, I am consulting neurosurgery to see if you are a candidate for shunt" I was speechless. I had no idea what to say or how to feel. The neurosurgeon told me that at this time I was not a candidate for a shunt, as it could paralyze me. In addition they move, clog, get infected. So I would have to be monitored closely with MRI's several times a year. I also asked if my children could have it and I was told no since I did not have a chiari malformation.

  As my two youngest children got a little older, they started having very familiar complaints. I made a doctor's apt with our family doctor and begged for them to do MRI on them. A couple days after the Mri the nurse called with an apt for Childrens for them and an apt for me to come in and get their results. I immediately broke down. I didn't need to see or hear I already knew.. my worst fear had come true. The had syringomyelia. Nowing the hardships they were about to face was too much to bear.

Seven years after my SM diagnoses I was diagnosed with Basilar Invagination and had a cranio cervical junction fusion to repair it, then a year later a fusion of C4 C5, L4 L5, then 2 years later I was dignosed with tethered cord syndrom and underwent yet another fusion to fix that. Currently I am scheduled for a baclofen pump trial to see if I am a candidate for an intrathecal baclofen pump to help with my pain and spasticity. My kids do not have any other diagnosises as of yet, but then again, no one seems interested in looking.

  If I had a dollar for every time I have heard a doctor or health care professional ask what syringomyelia IS exactly and then the next question is how do you spell that?? This needs to end. We need to spread awareness and find a cure!! I would not wish this on my worst enemy. Finding a cure is going to be difficult, if people don't even know what it is. That's how YOU can make a differance. Please help spread awareness and donate .. donate so we can find a cure!!!

 

   There is so much more to our story than I have time to write at the moment. I want to be crystal clear in the fact that the money in no way goes to me or my family. It goes to ASAP.org how provides awareness, gives grants for people looking for a cure, and helps those of us afliclited by the disease to know we are not alone. As not only a person with the disease, but as a mother of 2 children who are also aflicted * and it is not supposed to be hereditary, I am helpless. I am slowly loosing feeling all over my body, as well as the ability to use my arms. My spine is degerating everyday. To know that there is not a single thing I can do to protect my babies from the horror that lies ahead is beyond words. It is even worse when the magority of the medical community does not even know what it is, or how to spell it. Therefore, HOW are they going to be able to treat them. My son is not 13, and my daughter is 12. She is already having severe pain, and has alot of difficulty with balance and manipulating small objects. She is starting to get very frustrated when she is unable to do the things she wants to do. The only thing I can do is sit back, smile and reassure her. That is why I decided that I HAVE to do something. So now it is my goal to raise as much money as possible to find a cure, and to spread awareness. Your donation, no matter how small can make a HUGE differance. PLEASE HELP

Donations 3$ from each bracelet/keychain sale are being donated here are the people and amounts donated

Kelly Mullarkey (3) $9

Tracy Lynkins (5) $15

Cat Becker (1) $3

Joey Manso (4) $12

leslie Runde (1) $3

Michelle Mcgraw (2) $6

Kris Memert (1) $3

Michelle Ladue Kampanelli (1) $3

 

 

 

 

1%
  • Goal $5,000.00
  • Raised $54.00
Top Donations
  • charity's fundraiser - $39.00
  • Charity Heilbrun - $15.00
Sponsors
Donor Date Amount Message
Charity Heilbrun 9/13/2013 $15.00
charity's fundraiser 8/22/2013 $39.00 bracelet fundraiser