Life with “Epidermolysis Bullosa" (EB)

“Epidermolysis Bullosa” is a rare genetic skin disorder that I was born with. The skin tears and blisters very easy. The skin’s fragility of a “EB” patient is compared to butterfly wings. For example: Just by scratching an itch causes the skin to tear and come off.

Before my first amputation surgery of my right hand there was nothing I enjoyed doing more than anything in the world and that was shooting pool. The video below is of the last day I played a game of 9-Ball. Only days before my right hand was Amputated. Playing pool was the only thing I was actually really good at. Everyone who knows me, knows I loved to play pool more than doing absolutely anything else on this earth. I played an average of 4 hours a day and I’m not exaturating. Sometimes I would play for over 12 hours or more. I started playing pool in high school, but started playing seriously the summer of 1997,  right after graduating high school. I played continuously up until February, 2012.  I was paid to organize “Pool Leagues” & “Pool Tournaments” for more than 8 years at “CLICK’S BILLIARDS” in, Memphis Tennessee.

Check out the video below and  
Thank you for watching! Thank you for reading! Thank you for donating , but "only if you can!” You have know idea how much it means to me! I am Truly Grateful to you all! Please, if you can, help me reach my GOAL!



Introduction: 

Hello, my name is Todd Gatton. I am 38 and I have a very rare skin disorder that I was born with called,"Epidermolysis Bullosa"  Pronunciation:("Ep- e-Der-mo-Ly-sis" Bu-low-suh")
For more Information Visit: ”EB" Organization- www.Debra.org -
 “Dystrophic Epidermolysis Bullosa Research Association”




Anyone who knows me, knows that for me to start a GoFundMe Page means I have no where else to turn. I do have family and I get so much help from them, but it’s not there responsibility.  In fact I am extremely ashamed and somewhat embarrassed to have to ask for help, but I don't know where else to turn. My story is almost unbelievable, but it is 100% true.

I was told by my Doctor that my right foot had to be amputated due to a squamous cell carcinoma cancerous lesion located on my right foot. So on September 15th 2017, after a PET Scan, the size of the lesion measured (7.1cm x 5.6cm)
On January 7th 2018 the size of the lesion on my right foot measured (9.4cm x 8cm)
Please, take the time to Read My Story: 

I hope to get people thinking about there own life, by reading about mine. This story may be long. I just don't want to leave anything out that I feel is necessary for you to know. 



I’m Todd Gatton, I was born on May 1st, 1979 at 7:10 am just 7 minutes after my identical twin brother Jarrod Gatton, who was also born with "Epidermolysis Bullosa." (For info on “EB” Please visit, www.Debra.org)

  

Allow me to take a minute to tell you about my twin brother, Jarrod Gatton, because you must first hear about what happened to him and how he died due to the cause  of “EB.” In the late summer of 2009 at thirty years of age. I was living in Byhalia, Mississippi, where I am living now. Jarrod was living in Owensboro, Kentucky. Jarrod had a huge sore on the top side of his left hand and it was later diagnosed to be skin cancer.  He had hand surgery at “Cincinnati Children’s Hospital” a skin graph was done, but it did not help and he, “stubbornly” refused to have his hand amputated and also refused to take chemotherapy. Then, In June of 2009. Jarrod and I went to “Cincinnati Children’s Hospital” for a follow up Appointment. They have a team of a Doctors at “CCH” where they only see people with “Epidermolysis Bullosa” and are specialized in dealing with people who have “EB.” His Doctor, Dr. Anne Lucky, was and is a very nice Doctor. I will never forget the day she walked into the room with two other Doctors, as she began to tell Jarrod, and me, that the cancer has spread to his left lung and that he has at most, six months to live. While I was holding back the tears, Jarrod reacted as like he didn’t hear what was said, but he heard  exactly what Dr. Lucky had just told him. He reacted as if he was told it’s raining outside. At that time in his life he was walking, driving, feeling almost normal except for the pain in his left hand. So, on our way back home. That three and a half hour drive back to Owensboro is a three and a half hour drive I will never forget. Jarrod and I talked like never before. What we discussed will remain just between us.



So, on August 18th, 2009, I moved to Owensboro, KY to live with my brother, because the Doctor told him he would gradually soon begin to loose the ability to do things for himself and eventually be to weak to even eat on his own. Then, just like that. It was almost exactly three and a half months after I moved to Owensboro, KY to live with him. On December 12th, 2009. He died, laying in bed while my mother and I was standing over him getting him cleaned up and dressed for the day. Like the Doctor said, he had less than six months to live and it was almost exactly six months, and he was gone. I believe that was the hardest thing I have ever had to go through. Actually watching him die.

After that, I stayed closed up in my room for almost six months. I was extremely close to my brother to say the least. I can't even talk about his last weeks without tearing up.

Now, almost three years goes by after my brothers death. I’m living back in Byhalia, MS when a cancerous tumor started to grow on my right hand. On my right thumb to be exact. I went to see a dermatologist to have a biopsy done and the doctor recommended immediate surgery to remove my thumb before it spread any further. The surgery to remove my thumb was In August, 2012, and that surgery was a complete failure, just like Jarrods first surgery. The tumor came right back, and it grew so fast it took over my whole right hand. To prevent the cancer from spreading throughout my body or to my lungs as had happened to my brother. Another surgery was necessary, but this time they amputated my right hand.


 My right arm just below the elbow had to be amputated to be sure they got all the cancer. That surgery was on May 30th, 2013.  The Doctors amputated just below the elbow.  

After that two years past, and the tumor reappeared at the exact location were they amputated the last time. Again, another surgery was scheduled. It was starting to become routine.


The third surgery on my right arm was on November 15th, 2016. As of today the right arm, what remains of it,  is doing good and the cancer has not come back. 

My Christmas of 2016 went as good as I could've asked for and pain free, all considering. Then, no less than two months after my last surgery a cancerous tumor began to grow on my left hand. The tumor appeared on my left ring finger and was growing fast. I waited almost to long to have the surgery. 

I stayed in the hospital for five days while waiting for my surgery. The tumor was growing so fast, on the day before my surgery my ring finger fell completely off. The tumor was literally eating away at my hand. That surgery was on June 6th, 2017. I begged and pledded with the doctors to save my left hand. The Doctors promised to save as much of my hand as they could, “if they could.” But they stated, I shouldn't be surprised if I woke up from surgery with no hand at all.... 

Once I woke up from surgery. I was happy to learn that they had only removed, what was left of my ring finger and my pinky from my left hand. The Doctors told me that I shouldn't hold my breath, and the cancer is most likely to come back, but so far it has healed up completely. As of January 3rd 2018, my last test of my left hand came back cancer free. I can tell you this. Three fingers are definitely better than no hand at all.

 I wish I could tell you that’s, The End! But Wait. There's more....

Now here comes the worst part.


 I have had more MRI's, Pet Scans, Chest X-Ray's, and Dr.'s appointments than I can count in just the past 6 years. My last MRI, on August 29th, 2017 showed another spot of cancer, "Squamous Cell Carcinoma." A lession on my right foot the size is (7.1cm x 5.6cm) 

The lesion on my right foot was at the top curvature of my foot were my ankle meets with the top of the foot. It was there for five months and my Doctor recommended I have it amputated as soon as possible before it "Metastasizes." I can understand her concern, my Doctor I mean, and I was concerned as well.  I just didn’t think I could get around anymore if I had to have my foot amputated.  Even if it is, only just below the knee. Look, don't get the wrong idea. I'm not suicidal. I am in very good spirits, all considering. I have a good head on my shoulders. It's the realization that the rest of my life will be spent in a wheelchair.  I can't wear a prosthetic leg because of my skin disorder,
"Epidermolysis Bullosa." My skin tears and blisters really easily. For example: If you were to take the palm of your hand and lay it on the top of your thigh and with just light pressure slide your hand down to your knee. If your skin was like mine, then you would have just removed the top layer of your skin from your thigh down to your knee. It's hard to imagine if you aren't familiar with "EB." If you were to shake my hand and squeezed just hard enough to squish a Tomato. Then my hole hand would become one big blood blister.  I get blood blisters and water blisters. Please understand, I'm just trying to best explain what I, and most all people with "EB" go through.




I started this campaign before I had surgery to remove my right foot, I  don't see how I am going to be able to live and get around in the place I'm living now. I am now making adjustments to my home, where I can get around on one leg and one arm. You wouldn't believe how only three fingers can be extremely helpful to have when it comes to everyday activities. We all have to deal with obstacles to survive, but imagine having to live with one leg, one arm that only has three fingers remaining on the left hand. I can't wear a prosthetic leg nor arm because of my skin disorder.

 People living with "EB" that don't end up dying an accidental death have a predictable shortend life span between 30 - 50 and will die from the continuous growth of skin cancer.  It's almost a 100% Guarantee.  Anyone with "EB" that ends up living past the age of 50 is almost unheard of. There are very few people with "EB" past the age of 50 still living, and those that are, live in extreme pain every day.



The money i’m trying to raise will go towards making adjustments to my home. I have had a ramp built leading up to my front door.
( An update on the ramp. My brother in-law Jeremy Morris built it for me the day after Thanksgiving, on November 24th, 2017, along with my stepfather Mike Warren, my sister Haley Morris, and my 12 year old nephew Toby Morris helped a whole lot. ) 



I had about 900 square feet of laminate wood flooring laid throughout my home, because all I had  carpet except for my kitchen. All my doorways have been widened from 24inches to 36inches, to accommodate an electric wheelchair. My bathroom is to small to fit a wheelchair, so I am having a new bathroom put in my bedroom and I’m expanding my bedroom by combining two bedrooms into one. I will need an electric wheelchair that I am able to operate with just one hand, or three fingers to be exact, but I’m pretty sure my insurance should pay for  electric wheelchair. I know I will need many other things, but I will cross those bridges when I get to them. I am almost ashamed that I have to ask for help. I really hate that I have to ask for help, but I don't  know where else to turn. 



When I have a Doctors appointment I have to travel 3 hours to my see my Doctor and 3 hours back. My Doctor is a Orthopedic Surgeon,, Dr. Jennifer Barr, and her practice or office is in Jackson, MS.  In 2012, the time I began seeing my Doctor, no Doctor in the Memphis area would accept my insurance because I live in Mississippi and the closest Doctor that knows about a little about "EB" is a 3 hours drive in Jackson, MS.




Well, that's my story. I can't Thank You enough for reading my story. Any donation you are able to contribute would be a great xhelp and will be put to great many things I will need.  I'm only asking for help, because  I have no choice. Anyone who is able to contribute it is greatly appreciated more than words can say. Every little bit helps. To those who can not help, but wish they could, I understand and, Thank you! 

Thank you for reading my story. Any donations you are able to contribute, even five dollars ($5.00) will be a tremendous help! I can send anyone my address if you prefer other forms of Donating.

Thank you all, for taking the time to read my story! Please, encourage others to read, donate and share this on Facebook with everyone you know! Thank You, Thank You, Thank You!



P.S.
  
If I raise enough money. I would really love to get my teeth fixed. Most all my teeth have rotted and chipped away down to my gums.  “EB,” the skin disorder I have has caused most of my teeth to fall out. It’s embarrassing for me to talk to people and when I smile I keep my mouth closed. Emagine living with no teeth, or just having teeth that are chipped down to your gums.

Please! Help me reach my goal.



THANK YOU ALL FOR READING MY STORY, SHARING MY STORY AND FOR DONATING TO MY CAMPAIGN! I LOVE
❤️ YOU ALL!  I PRAYEVERY DAY GOD BLESSES  YOU, AND EVERYONE ON THIS BEAUTIFUL PLANET . 

PLEASE, IF YOU OR ANYONE HAS ANY IDEAS THAT WILL HELP ME REACH MY GOAL, PLEASE EMAIL.

Thank You!
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Organizer

Todd Gatton 
Organizer
Byhalia, MS
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