Dawn needs more time with Bug

25534008_1512230385.0353_funddescriptionDawn needs more time with Bug!

Dawn and Shannon, her husband have been together for 22 years.  They were high school sweethearts and have been together ever since.  Dawn and Shannon wanted a family, after over a decade of trying, they finally were able to have a very special little girl, referred to affectionately as Bug, who is now 10yrs. old. 

Dawn was diagnosed with a serious life altering disease that could be deflected with a surgery that the insurance company is refusing to approve.  Instead, the insurance company is stating that when Dawn hits the ‘critical’ stage, they will add her name to a transplant list.  Insane as that sounds, what’s even harder to believe is that the surgery that could stop the need for a transplant is approximately $11,100 [which they won’t pay for] and the transplant would be $120k [which they’re willing to pay for].  Every day that goes by the transplant becomes more of a reality than an option.

Dawn's  Story:
It is easiest to start where it all started. I was born this way, sounds like I took it from a song, but it is the simplest explanation. Since I can remember (about the age of 7) I have had issues with dumping syndrome. For those who don't know what that is - you eat and then you go. I thought that was normal for the longest time because that is all I knew, that was my normal. My siblings use to joke that I always had to check out the wall paper in bathroom everywhere we went and who's turn it was to take me. Then as I got older, my body didn't mature like everyone else's. Yes, I am talking puberty. At the age of 18 I started seeing a specialist at MUSC. Nothing like sitting there in the chair with a nurse drawing blood as the doctor is literally flipping through a medical book to see what blood work to draw because they don't know where to look for answers. Finally I was diagnosed with Isolated Gonatrophian Syndrome. Which basically means - they discovered that the lower quadrant of my pituitary gland was damaged, hence I was born this way as far as they could tell, but had no way to know why. That being said my female organs quit growing when I was about 2. I do not produce the essential hormones needed to go through puberty. Not to sound gross, but I have never had a period. I went to the doctors and took estrogen, testosterone, and numerous other prescriptions that all did nothing because my body did not absorb things normally (dumping) and had to take really high doses. After many years of this the decision was made that it was not good for my body to take such doses without results.

Fast forward a few years, we decided to try fertility treatments with a specialist to see if we could get my body to jump start and try to start a family. During that time I never knew you could go through so many emotions in a manner of minutes, believe me I was an emotional roller coaster; nonetheless, it was to no avail and the doctor recommended that we stop with the treatments. My body just would not absorb the medication and we stopped.

Now during this time I was still seeing my endocrinologist and taking various meds for hypothyroidism and Hoshimotos, which is a autoimmune disease. It is a hidden disease that affects a lot of people but back then not a lot was known about. I went through years of being tested for everything from lime disease to blood cancer. My white blood cells would sky rocket and I would (and still do) get sick (flu, cold, weather change, you name it) every time I turned around.

Ten years ago we were blessed with a beautiful little girl. That is a chapter of my life that changed our lives. That is a story within itself but her gotcha day is a day that I will never forget (just to confirm - we adopted her and a new way of life - just like all new parents do). She made me stronger and made it so I would not feel so sorry for myself. At times I look at all my personal medical lows and it has given us such highs with her.

Over the following years I had issues that no matter who I went to or what I tried it seemed like I was always sick and the doctors could never put their finger on it. I have had more than one doctor or specialist tell me I am a conundrum. They just didn’t have any answers, try this medicine or that - I can honestly say I have felt like a guinea pig more that once.

Four years ago this December my body had a major break down, and believe it or not it happened at Disney World of all places. A day we looked forward to and worked hard for to see the Magic of Disney through our six year olds eyes. I can tell you my strongest memory of that time was waking up in an ambulance seeing pink mickey ears on top of my sweet babies head, as she looked down at me on the way to the hospital. (She has many fond memories of our visit but she still remembers this and I hope someday to replace this memory). I had passed out and my head felt like it was going to explode but no one could figure out why. Since then I have been to multiple doctors and more appointments / tests than a 45 year old should have been to. The pain is in one Area and then just moves on to another part. Now when I say pain, I mean on the floor can’t move because I would have Charlie horses in my intestines that I would have to manage through as the it traveled through my ENTIRE intestinal track. It would happen if I ate, if I didn’t eat, or just out of nowhere. I have literally had to lay down In the floor in dressing rooms, managers offices, even parking lots. And it has happened more than once where my baby had to stand there and watch. There was nothing I could do, I was immobile. There is times I would wait an hour in extreme pain waiting for it to release before I would go to the ER because depending on which doctor I got they would think I was just there for the pain meds. They would do all the tests and blood work (and again nothing would show). How do you see a cramp in your intestines - answer - you don’t! Within three months I had gained close to 80 pounds, which only made matters worse and still unexplainable. One day I woke up, went to make Bug breakfast and sneezed. That day I thought I was literally going to die. That was my scariest day ever. I had a radiating burn in my left side that I thought was a ruptured intestine. I went to the ER and thank God the doctor on staff that day believed me. The cramp was so intense you could see the brick size knot under my skin as it cramped and moved - I had blown my abdominal muscle because it was so weak from all the Charlie horses over the last few years. I was able to find a gastrologist (and I have seen plenty) who finally went the extra mile. He could see the damage and everything that I had told him but could not figure out why! I had upper and lower endoscopy, more blood work, even swallowed a camera so he could see everything (which was like fast forwarding through a movie because I of course - dumped it. Record time just over 2 hours). He could see the swelling, and was baffled. Again - doctor pulls out the medical book and flips through trying to think of something to test. ......

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Organizer and beneficiary

Carlene Negron 
Summerville, SC
Dawn Griffin 
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