A Letter From The Fullmer Family
Heal EB was founded to raise awareness and funding for a little known skin disorder called Epidermolysis Bullosa(EB). This cause is paramount to us because our son, Michael, was born with EB.
EB is a skin disorder that leaves the skin vulnerable. Those born with EB are missing a protein that holds the layers of the skin together. Any friction or rubbing on the skin will cause tearing or form blisters. If the blisters are left alone they will continue to fill and continue to spread the layers of skin apart. This disorder causes damage internally as well such as organ failure, malnutrition, and malabsorption. As a result of EB life expectancy is severely limited.
Any parent’s nightmare is to see their child in pain. EB is our nightmare, as it inflicts a mixture of acute and chronic pain daily. Seeing Michael in pain daily is excruciating for all of us.
Bandaging is one of those “necessary evils”. Our only way to help protect and heal the wounds he has is to bandage him. The process is always painful but ultimately helps to prevent infection and continual trauma to a given area. In six years we have still not been desensitized to the screams of pain that happen daily as a result of EB.
We have also not been desensitized to the disappointment on Michael’s face that comes from not being able to enjoy simple freedoms that other children experience without consequence. Freedoms like riding a bike, running, eating, bathing, giving hugs, etc. Regardless of EB, Michael is a happy and friendly little boy with a big heart. Our dream one day is to see him experience simple freedoms without consequences.
- Ryan & Heather Fullmer
August 24, 2008 was our family’s 9-11-2001. We were caught totally by surprise by an enemy we thought happened only to other families. Our fourth child, Christian Robert Villa was born and doctors knew something was wrong. He was missing skin on his foot and soon after it was his whole body. Learning all we could about this disease in the first crucial days, we felt like we were thrown off a cliff and were in a constant freefall. Quite possibly the hardest day of our lives was the day we checked out of the hospital and had to leave our son there. It took a few days to get a final diagnosis of Recessive Dystrophic Epidermoloysis Bullosa, but took even longer for us to learn to pronounce this disease that had invaded our lives.
We had never heard of the disease. We were in shock and full of questions and fears. Would he live? What would his life be like? What do we do? How do we take care of him? How can we fix this? How were we going to deal with this? What bothered us the most was that no one, no pediatrician, no dermatologist; no one could give us any specific information about EB. We got on the internet and started learning everything we could, but that was a mixed blessing. Did we really want to know all the things that could happen? It was overwhelming. Finally we came to the realization that we knew what could happen but we were going to take it one day at a time and deal with the various side effects as they came.
Nothing prepared us for having to peel bandages off our newborn’s skin while he wailed in pain and we were helpless, doing what we knew needed to be done. The first few months we spent 3 hours a night doing bandage changes. It was upsetting, knowing we were causing so much pain to our son night after night. So this became our new reality, numerous doctor appointments, nutritionist, occupational therapists, physical therapists, dermatologist, obtaining supplies and bandage changes. EB consumed our life.
We are now three years in, and it’s still a constant learning process. We continue to meet with doctors, scientist and other families with EB. We have tried numerous ointments, bandages and wrapping techniques. We even have an ongoing debate over which one of us has the better hand wrap technique. EB is part of our life, but not all of it. Christian lives a comfortable and happy life. He is a blessing. All it takes is one look at that toothless smile, and you’re hooked. He’s the happiest 3 year-old you’ll ever meet. He’ll sing you his favorite country song as he rolls his eyes and dances in beat.
As horrible as EB is, every one thinks it’s about the bandages, but you get use to the bandages. It becomes part of your routine, part of your life; you almost don’t even notice the bandages any more. What’s devastating is just when you think that you have wrapped your mind around this dreadful disease that you have learned to deal with it, that you have come to terms with it, you’re hit with that staggering thought, like realizing, our son will never run barefoot on the beach and get to feel the sand in his toes. It’s the part of your heart that breaks when your son tells you he wants to play baseball when he gets bigger and you know that the chances of that happening are small. It’s the search for the right words to explain to your other children about the ignorance of other people who rudely stare at Christian.
We like to think we were chosen by God to care for Christian and because of that, we are truly honored. We sometimes come across impatient or apathetic parents and other people who we know would have no chance of properly caring for an EB child. We sincerely thank God for the opportunity to provide the care Christian needs. Everyday we pray, make this better, make his pain go away. We dream of a cure. We truly believe that a cure is coming and coming soon, it has to.
- The Villa Family
Hello my name is Christina, 13, and I am fighting with Epidermolysis Bullosa (EB). It is not as bad as some others with this disease but I still can’t do everything that the average person can do. My sister says I am mean and I admit I am mean sometimes, but it is not for no reason. I think about what I can’t do all the time!! Like not being able to ice skate or go in a jumpy house or walk around a mall or play a game of soccer- without paying too much for it later. Some days I am not mad about what I cannot do I am thinking about other issues in my life connected with EB and sometimes my friend’s life too and I want to make people happy and not sad.
I get mad that I can feel pain in my body and I just wanted to have a good day. Sometimes the pain will eventually go away but sometimes it gets worse and worse. Like last week, I had one of the worst pain days I have had in months. When I woke up I felt some pain which is normal, so I didn’t tell my mom. It was getting worse and worse, I could feel it. About 1 o’clock I was in so much pain I had to go to the bathroom at school and see by why my foot was killing me. I realized that my toes had blisters under a lot of dead skin. I tried to peel some dead skin off but it hurt SOOO bad I wanted to burst out screaming but I contained it until I got home. When I did get home I immediately got a bucket of water and ice and put my foot in it. It took 5 hours of numbing, screaming, medicine, and praying until I could deal with the pain it causes to go into the blisters with a needle. To be honest, I have no idea how these other EB kids do it when they have it so much worse. After being a mini doctor and peeling off dead skin which still hurt really bad (even if it is dead- the skin underneath is not) I found the blisters and popped them and it gave relief of the pressure and then my anger went away. I was so tired from the drama and medicine my mom gave me, that I just went to bed.
When I was little I would hate playing with dolls (and I still do). I prefer stuffed animals (which I still do). I liked the stuffed animals better. The reason why is they were soft and they didn’t hurt me, my hands, to play with them. I was worse when I was little. I would get more blisters on the back of my head from sleeping. I would also get them in my mouth from drinking out of a bottle, around my nose from being sick, on my arms and legs from clothing, on my neck from my own hair. My hair would be stuck to the back of my neck when I woke up in the morning. I still get blisters anywhere I itch then scratch, then I get a blister which makes a scab. The scab itself then makes a blister, which makes scabs, which makes blisters, which makes scabs, which makes more blisters!!! I hate EB.
A Decade Later…
It has now been more than 10 years since our daughter made her grand entrance into this world. I often wonder what force has kept us afloat in the last ten years and how can I bottle that force to keep us going for the next 50+ years ahead!
It has not been an easy ride – we’ve had the skin on her hands and feet degloved numerous times, restless nights of wounds draining right through the bandages and waking up a bloody mess, many dilemmas with eating a whole plate of soft foods due to lodging and tearing of the esophagus, bathroom issues that range from discomfort to dreadful, eye abrasions and lesions that makes it painful to see sunlight and countless trips and falls that caused tearing, shearing and shifting of skin on her nose, cheeks, lips, elbows, knees, thighs, legs and so on. You name it and some aspect of her body inside and out has endured the wrath of EB.
We’ve had more heart to heart conversations than we can count on both hands attempting to explain why she has certain limits and lessen the desire to do certain things that can cause her more physical wounds. We spend nights before an event making sure all precautions are taken care of just to have a few hours of fun – lubricate the eyes so we do not wake up with unexpected eye abrasions, properly do wrappings to make sure we have little to do the next day and get out of the door at a decent time, prepare food and snacks to take as backup in case there’s no “EB friendly” foods at said events and pack a kit with all the wound care necessary for a full dressing change just in case we have an accident. Going on vacation requires months of coordination and mapping to make sure we can maximize our time together. Nothing is ever simple with EB.
The one thing that has managed to stay strong and grow with confidence is her soul, spirit or inner light! Something that EB has not managed to ravage and take control of! In every sense of the word we have a “normal” 10 year old who is a 4th grade gifted student, a part of her school’s chorus ensemble, an active participant of the Alpha Club and a school sponsored Diva’s Club (a club specifically geared towards young girls speaking their minds in a productive and safe environment). Aside from this she has made some great friends. She has two very good friends, her BFFs if you will, that help her out at school. They hang out, go to the mall, movies, fair, bowling, plays, you name it they’re doing it.
Bianca enjoys playing with her dolls, draws and colors, sings, dances, reads, watch TV, going out to dinner and shopping. All things a girl her age LOVES to do…you know spend her parent’s money. She picks up her toys, organizes her book bag, cleans her plate, brushes her teeth, gets dressed, combs her hair and showers on her own. Speaks her mind quite often and leaves us in awe at how intelligent she really is for her own good. When one of us is sick she’ll try and be helpful by bringing a cup of water, a pillow, blanket or a tissue.
In reality nothing is easy in life period. I have come to realize that we are all equipped to handle what is thrown at us in our lifetime. We have the tools within us to get through this life one way or another. We have also come to realize that we are all a statistic – something some of us in the EB community become obsessed with. When we jump in the shower, get in our car, walk down the street, etc…we have a risk of something happening. That’s why I have removed the “statistic mentality” from my frame of thought. Let's be honest there are limits to the things you and I can do - like jump off a bridge without a parachute or walk on broken glass... Overall this road we are walking has not been easy. In retrospect if it wasn’t for EB we would not have visited such great places like Denver, San Francisco, Nashville, or Cleveland to name a few. Also, our family would not have met so many great families that are dealing with EB and formed such a level of gratitude and understanding that many do not get to experience. The bonds we have created will last for many generations to come. As much as EB can sometimes try to isolate us and tear us apart our family has learned to use it as a tool to achieve interdependence with many outside of our own household. Ironically enough it has made us much more social than we were before our beautiful daughter was born. So take that Epidermolysis Bullosa! You can knock us down but you can’t keep us there…
- The Contreras Family
You can find their family blog here.
Barberini's and EB