Life with “Epidermolysis Bullosa" (EB)

Hi!  My name is Christopher Todd Gatton. I have a skin disorder called, “Epidermolysis Bullosa.” I am wheelchair bound, because I only have one leg and only one arm. My only hand is my left hand, but it only has three fingers remaining. 

I have been told by many people that my story has made them very emotional and was hard to read. But this is my life and it’s all I know. I’m not looking for sympathy, and “PLEASE” don’t feel sorry for me. 

“This Is My Story.”

I was born with a non-contagious skin disorder called, “Epidermolysis Bullosa.” A rare genetic skin disorder. Pronounced: (Ep-uh-der-mo-lie-sis Buh-lo-suh)

My identical twin brother and I was born May 1st, 1979. We both were born with “Epidermolysis Bullosa.”

There are three types of “EB.” Dystrophic, Junctional and Simplex and each type has a sub-type. Recessive or Non-Recessive.

The type and sub-type my brother Jarrod and I was born with is, Recessive Dystrophic. We were diagnosed with, Recessive Dystrophic Epidermolysis Bullosa, or “RDEB.”
 
I know it all sounds very complicated to understand. It’s taken me years just to learn everything I know about “EB.” 

A person born and diagnosed with RDEB has skin that tears and blisters very very easily. The skin’s fragility of someone with Epidermolysis Bullosa, “EB” for short, is compared to a butterflies wings.

For example: Just by scratching an itch will cause the skin to tear and bleed. The slightest bump can cause the skin to blister, split open causing a sore or the skin can come off completely. A simple fall can look far worse to an average person than it appears.

By sharing my life story with everyone I hope to raise enough to help supplement the cost for bandages and other supplies needed for daily care. 

My financial situation has gotten worse since the cost of living went up on every thing. I do live alone, but I have family help very close by. I want to be able to support myself financially. I don’t want to be a burden to my family. Living with “Epidermolysis Bullosa “ and what it has done to my body and my physical capabilities has caused me to set up this GoFundMe Page.

The reason I am raising money is to help pay for everything I need to live and maintain a healthy life. Anyone who lives with EB or has a child with EB knows it’s not cheap to pay for bandages and other medical things that are needed to take care of my daily needs.

When I was born the Doctors told my parents that my brother and I would only live six months, at best. After six months passed our life expectancy went up to one year. After six months in the Hospital. The Doctors sent us home to live our life’s. When we turned up alive and over one years old. The Doctors didn’t give anymore life expectancy predictions to my parents.

I’m now Forty-Three years old and have lived a very long and hard life so far.

In December of 2009, my identical twin brother Jarrod passed away from cancer brought on because of “EB.” Since his passing I have had Cancer four separate times and have had four separate amputation surgeries to remove the Cancer.

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. 

 Allow me to take a minute to tell you about my twin brother, Jarrod Gatton.  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 our home town, Owensboro, Kentucky. Jarrod developed a huge sore on the top side of his left hand and it was later diagnosed to be skin cancer, (squamous cell carcinoma.) He immediately had hand surgery at “Cincinnati Children’s Hospital” a skin graph was done, but it did not help. 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 the news.

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.

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, he died.  

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.


 After just two years of Jarrod passing. In early 2012 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. In order to prevent the cancer from spreading throughout my body or to my lungs as had happened to my Jarrod. Another surgery was necessary, but this time they amputated my right hand. They amputated just below the elbow to be sure they got all the cancer. That surgery was on May 30th.

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 now. 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, and 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 today, May 5th 2022, 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 10 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.

The sore or Lession had been there for five months already 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 even wear a prosthetic leg because of my skin disorder, "Epidermolysis Bullosa." My skin tears and blisters easy.

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 very easily.

Please understand, I'm just trying to best explain what I, and most people with "EB" go through.

 I first started this campaign before I had surgery to remove my right foot.

At the time I couldn’t see how I was going to be able to live and get around in the place I'm living now. Adjustment's we’re made to my home, so I can get around in a wheelchair with one leg and one arm and three fingers.

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, and 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.



Not to make things sound worse, but with everything I have gone through there’s something else I almost forgot to mention. I have lost about 90% of my teeth because of “EB.”

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,” has caused 90% of my teeth to fall out.

It’s so 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.

Well, that's my story. I can't Thank You enough for reading my story. Any donations you are able to contribute will be a great help and will be put to great many things I need every day.

I’m only asking for help, because I have no choice. Anyone who is able to contribute, it will be 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 and anywhere else with everyone you know! Thank You, Thank You, Thank You!

 Thank you for your donations!

You have know idea how much it means to me! I am Truly Grateful to you all! Please!  Help me by making a donation. 


Below is a video of me playing pool, just a week, or so before my right hand amputation surgery. You can watch the video below of me running a rack of nine-ball.  

Thank you for watching!  



For more Information you can Visit the ”EB" Organization. www.Debra.org - Debra stands for, 
 “Dystrophic Epidermolysis Bullosa Research Association”



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!