Charlie Part I

I am infected. My life and my job do not have have a starting and end point. They are co-mingled; woven through every fiber of my being.

I am affected by the people whom I meet: Each brave child battling a life-threatening illness; each mom trying to keep it all together; each sibling who is oft neglected; each dad who feels helpless that he couldn’t take the bullet himself and spare them all this anguish. Each have a story.

Sometimes I am absolutely rocked to my core by one of them. When I heard a mom testify in front of the media and our State Legislature (to stop a bill that threatened adult stem cell research), about her son’s plight with the most devastating of diseases, Epidermolysis Bullosa (EB), I knew that I would never be the same.

I am proud to now call this woman a friend. She is my hero, actually. She’s a bona fide angel if ever one existed. Here is an excerpt of this gut-wrenching testimony. In the near future, I will post Part II, an update on Charlie’s condition, and how you can help us write a happy ending to this story.

By Trisha Knuth

When Charlie was born in a small Wisconsin town, his infant body began to blister immediately. Skin slid off his body when nurses and doctors began the normal routine of handling a newly born infant. Days went by and no one came for him. He lay alone in the NICU slathered in Vaseline and wrapped with bulky gauze. My husband and I received the call from Social Services asking us if we would consider fostering a baby with Recessive Dystrophic Epidermolysis Bullosa, a rare disease that is a missing protein that binds his two layers of skin together, inside and outside the body. We were told to keep him comfortable and that he most likely would die in the first year of his life.

You can only imagine as his mother and primary caretaker how it felt to have to torture my own son for hours on end on a daily basis. You see, I had no choice. In order to prevent infection to the wounds that covered 95% of his body, similar to burns with nerve endings exposed to every sensation, baths spiked with vinegar or bleach were part of the daily regimen.

Charlie’s body was ravaged by open wounds inside and out

Removing his specialized dressings, which cost $15,000 a month, could only be done in the water because even though they were made not to adhere to skin, taking them off dry would take off sheets of Charlie’s skin in the process. The process of disinfecting, removing dressings, lancing tense blisters with sterile needles, applying creams, ointments, accessing wounds, and choosing appropriate dressings took upward of 5 hours a day.

The torture regimen that defined Charlie’s life was relentless. The psychological toll it took on me was obvious. Most of the time, I had to make myself numb to emotion because I knew if I cried that Charlie would cry harder. Some days, my strength was just not enough. I can recall a day when Charlie was 2-years -old and all the skin was missing from his chest. I could see that it was becoming infected from the constant deep itch that never subsided. Even though Charlie’s fingernails fell off in his first year of life, the constant rubbing caused infection and further breakdown of his skin. In order to heal his chest and prevent another hospital stay with IV antibiotics, I had to clean his chest with a combination of water and vinegar to kill the obvious pseudomonas that was taking over. Charlie was standing in the bathtub because he refused to sit down. I slowly poured the acid spiked water over his body. The scream could be heard for blocks. And then the scream was so intense that it turned silent. I can envision what his face; his body looked like even now. Shaking, red, and convulsing. The pain, so intense caused Charlie to madly ravage his body. Ripping skin off his face, ears, groin, and chest. Blood dripping in the bath and covering me as I tried desperately to console him. I can remember that I could just not contain myself and as I tried to hug his ravaged body I myself began to cry. Can you believe that in this moment, a two-year-old child began to comfort me? “Mama don’t cry, I’m OK.” It’s OK Mama.” and we held each other that way, with the blood, the missing skin, the infection and all.

That moment will be stamped in my brain forever, but this moment would be repeated in our lives numerous, numerous times.

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13 responses to “Charlie Part I”

  1. Bonnie Ely says :

    Oh Trisha ~ God gave Charlie an angel when you became his Mama and he blessed you with Charlies love. I hope you know how much you have inspired others. Keeping your family in our prayers. Love from above, Jerry & Bonnie

  2. Jen says :

    Oh sweet mother of charlie, I have 3 children and cannot even imagine what you face on a daily basis. You are the strongest woman in the world. My heart aches to find words to say to you, but there are none to convey the weight of sadness that I feel over what you have to go through.

  3. Barb says :

    WOW, so heart wrenching. God Bless you and your family.

  4. Michelle says :

    Heart wrenching!

  5. Carla says :

    All I can do is cry and think about my friends beautiful Daughter Bella who suffers from EB, Thank GOD YOU Cared for Charlie you are truly an Angel!!

  6. Angie says :

    Wow your story brings tears to my eyes. May god watch over Charlie and his family.

  7. Rebecca Hruska says :

    My heart cries for Charlie and all the pain is has had to deal with his entire life. He has been so brave and has been able to force his little giggle for little joys in his life. I pray God heals him and lets him finish his life with no pain and enjoy his loving family. Love you Charlie! Becky and Bella Jo

  8. Amy says :


  9. herly acoba says :

    i will always pray for you son .May GodBless you

  10. hopefaithcure says :

    Trisha I thank you for sharing Charlie’s story before I knew about Charlie I had NO idea what EB was what it meant I had NO clue! reading this and knowing what Charlie went through/ going through broke my heart so bad! NO CHILD should EVER have to endure such a horrid disease ! I have tears in my eyes right now we need a CURE and we need it NOW

  11. Linda says :

    i agree we NEED a cure no child should have 2 endure such pain i also have tears-i love your little boy hes so sweet my prayers r with all of his family aswell as him-no parents should have 2 endure this -my heart breaks…GOD i ask u heal charlie ….stop this little boys pain n his parents pain —we r praying 4 a cure 4 charlie n every child with this awful diesease….hugs 2 all of u ………

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