Charlie Knuth's Journal
Written Jan 28, 2013 9:12pmOn Monday Charlie will be back in Minnesota. He once again will be sedated in the OR and have biopsies and dressing removal for pictures. We have done this so many times now. It never gets any easier. The anxiety I feel leading up to this event consumes most moments of the day and makes it hard to catch my breath. I often wonder if I have some sort of PTSD. I am instantly scared and sad when I think about going back and flash backs of Charlie's graft loss and his suffering play in my mind. I do not know why I do this to myself. Why I imagine scenerios of this happening again. I can not watch him ever go through this again. Things are a little "off" with Charlie right now. He was doing super. He began walking again, his numbers looked great, he is in physical/occupational therapy, and he has a great teacher who comes over 4 days a week for school. Little things have me worried. His knees began to hurt again and he can hardly walk again. He looks pale and the non-healing wound on his neck is very painful. These are all things that occurred before he lost his graft last spring. These are also things that can occur when he is fighting off a virus...either way. I am scared. I took him in to have labs drawn today and I still haven't gotten results back. Praying that no news is good news. After all this time, and all these trials....this worry and sadness never ever gets any easier.......ever.One year ago, I was preparing to go to Seattle Washington to meet the little boy with EB who we were preparing to adopt...This monday, the day of Charlie's procedure in the OR, is the very day a year ago that I met little Sethie Ray. Life can be so sad some days.
Written Dec 2, 2012 8:29pmI have just returned from my trip to Minnesota to speak at the "Wings of Hope" event to raise money for EB Research at the University of Minnesota. It was an incredible honor to be part of an event which shows such compassion and bravery. It takes an extreme amount of courage to help children with Epidermolysis Bullosa. I am very aware that there are many who do not have this kind of bravery. This is a tribute to Dr. Jakub Tolar.
When Charlie was born in a small town in rural Wisconsin he began to blister immediately after his birth. The skin slid off his body when nurses and doctors began the normal routine of a caring for a newly born infant. He was transferred to a pediatric hospital in Wisconsin shortly after, but no one from his family came for him. Not his mother, father, Grandmother, Aunt, no one…….. He lay alone in the Intensive Care Unit. Born into this world, only to be left in a hospital, in excruciating pain, with no one to comfort him. My husband and I received the phone call from Social Services asking us if we would foster a baby born with a very rare skin disease. At first, we were told he had the most severe form called Junctional Epidermolysis Bullosa, and that he would die in the first year of his life. We prepared ourselves to give this baby the most comfort, love, and security we could until the day came he would die. I brought Charlie home a week later with a large supply of morphine, Vaseline, and gauze.
You can imagine my shock, surprise, and confusion when I was told at his first dermatology appointment a month later that Charlie did not have Junctional EB at all, we were told this in error. He actually had Recessive Dystrophic EB. He was missing collogen 7, the protein that binds his skin together. He would probably not die in the first year of his life, but worse, he could live this torture for years only to become completely disabled, and die from infection or an aggressive form of skin cancer. The doctors explained that there was no treatment for EB, only wound care. Maybe, in Charlie’s lifetime a cure would be found.
This is the first time the thought of adoption crossed my mind. To imagine a child with such a painful, complicated, debilitating illness bouncing around the foster care system was inhumane. We loved and protected Charlie just as we would our biological children. Despite the opinions of others who feared for our emotional well-being, Charlie became legally a Knuth one year later.
When Charlie came home with me from the hospital at just two weeks old, I never could have possibly imagined the torture and abuse EB would inflict on my child. I am glad I didn’t, because I just don’t know if I would have been strong enough to take on this unbelievable challenge.
As an infant, it was visually apparent that Charlie was in enormous pain. Even though I was able to keep the skin on the outside of his body protected, the skin on his tongue was completely absent. Lydocaine coated his mouth prior to any sort of eating, or the pain of sucking a bottle would make eating impossible. Charlie would choke on the skin that slid from the roof of his mouth and become lodged in his throat. The blisters that covered his esophagus would rupture and leave raw open wounds. At night as I lay in bed awake, the sound of blood gurgling with every breath he made would play over the baby monitor. We kept the curtains closed and stayed indoors most days. The light of the sun or the gentlest breeze would blister his eyeballs and render him blinded for days. Sound agonizing?? When Charlie turned six months old, the challenge of caring for him became 1000 times harder. You see, Charlie figured out that if something on his body itched, he could rub it. It started with the sides of his torso. He would slide his little arms back and forth tearing the skin from both his sides of his body. Just as one side of him would heal, he would destroy the other side. Then, it was his ears. Even though his fingernails literally popped off his fingers as in infant, any sort of rub at all would take his skin off. The constant rubbing of his ears created constant wounds, infection, and blisters that spread from his head to his toes. Where ever we went, the eyes of others were upon us. Often, I was glared at and scolded by others who had assumed that he was burned or somehow mistreated.
The emotional torment EB caused Charlie and our entire family is very difficult for me to talk about, but this side of EB is by far, the most agonizing. When Charlie was just a toddler, I would beg and plead with him not to itch. This itch was so deep that it could never be relieved. This itch began to run our lives. The need to observe every movement Charlie made became necessary to protect him from himself. Charlie became aware of this very early. If he wanted any sort of attention at all, all he had to do was raise his hands near his ears and he knew that we would come running. After hours and hours of painful dressing changes, Charlie often would silently itch his face and ears while napping. His sheets, and new clean bandages would become covered in blood, all of the torture that just ended would have to be redone. The constant stress of avoiding more of Charlie’s own self- damage made it difficult for me to breathe. Charlie would scratch when he was tired, when he was happy, when he was anxious, and when he wanted something. If he didn’t want to go to bed at night, all he had to do was itch. The painful consequences of his own self damage didn’t matter. Having actual control over something in his life when nothing else at all was controllable was far more important to him.
He now had no skin on his forehead, his ears, his chest, neck, under his armpits, his groin, or his torso. In fact, he was missing skin in about 90 percent of his body. His own little fingers would spread infection from his head to his toes.
Baths became torture. The only option we had to avoid systematic infection was baths spiked with bleach or vinegar. High doses of narcotics did nothing but cause more itching. The intensity of his pain during baths caused him to ravage his own body. Out of desperation to protect Charlie, I was forced to create restraints. Small boards with padding were placed in the bend of his arms and kept in place with rolled gauze. These restraints could not be removed during baths and dressing changes until his body was completely re-dressed and protected. This took many hours each day and often to my complete devastation, he would re-injure and rip of all of the dressings that were just reapplied. The torture routine began to create behaviors similar to someone with post-traumatic stress disorder. Most tasks done with Charlie had to be done in a “certain order.” Left foot, then right, up the stairs. Each time our feet landing on the step at the same time. Any misstep at all would start the process over again. If dressings were placed out of order, Charlie would beg to have them removed so we could “start over again.” Hours and hours each day were spent just bargaining, bribing, pleading and begging Charlie to let us care for him. The sadness, helplessness, and constant anxiety consumed my life.
As a mother, the daily task of restraining and torturing Charlie just to protect him and keep him alive, and neglecting the rest of my family was profound. I was a safe “outlet” for Charlie’s anger and frustration as well. Every bath was filled with violent threats by a four year old child. Dealing with his agony the only way he knew how. Day after day during dressing changes he screamed that he wanted me to die and that he was going to kill me, only to cling to me afterwards for comfort. “I’m sorry Momma, I don’t mean it.” I know Charlie, it’s OK….”You understand right Momma?” …..”of course I do.”
I used to think that if we could just control the itch, then life would be so much easier…..If only Charlie didn’t tear the skin off his face. Then I could handle it. I could handle totally wrapping his body, but I just want to feel his face against mine. I want to kiss his cheeks and stroke his hair…
Charlie’s first transplant was December 30, 2010. The dressings that covered his entire body from head to toe are gone. The hours and hours spent peeling, preparing, cutting, and organizing dressings on a daily basis is gone as well. Baths and dressing changes that used to take an entire day have been cut down to one hour. Even though Charlie’s skin still blisters, it has gotten much stronger. No longer will skin slide off his entire hand like a glove creating a perfect mold made of flesh. He has not required any narcotic mediation for baths since his first transplant. Now that his body can absorb nutrition, he has gained ten pounds and has grown many inches taller. The pale and translucent appearance of his skin has been transformed to healthy pink skin.
This is for you……
Your research and passion to give my son and others like him a life worth living has trickled down and has changed the lives of my entire family…You know the science, the research, the physical difference this treatment makes. You see it first-hand. What you don’t see, is how it changes a families entire dynamic. My daughter Chloe can now play with Charlie without fear. Fear that she is going to accidentally hurt him and cause skin to slide off his body. Fear that her mother is going to yell at her for once again causing Charlie more damage and now her mother has to do more wound care when she just got finished, and there is dinner to be made, and laundry to do, and messes everywhere that need to be picked up and on and on and on…and when Daddy gets home, he will have to help Mom because she just “can’t do it all by herself.” And older brothers Alex and Hunter don’t have to “take care of Chloe” while I do wound care all day. They actually can have a life, play X Box with their Dad, go hunting with Grandpa, have a part time job, and hang with friends. Now, they can continue the weekly tradition of watching, “The Walking Dead” with their Mom every Sunday night.
Kevin can come home from a work without the stress of the day being immediately thrown at his face the second he walks through the door. He no longer has the mental anguish of helplessly watching his little boy suffer agonizing pain. He doesn't feel as though he is useless around his wife because he cannot “fix” the relentless stress that consumes every minute of the day.
Charlie doesn't damage is own body anymore…The violent outburst and threats directed at the people who protect him, love him, and fight for him disappeared on December 30, 2010. The day he had his first transplant. Charlie wrestles with his dad and his brothers. Plays with other kids and lives each day without anxiety. For the first time last summer Charlie went swimming and ran through the sprinkler. The water that once tortured him…… now is a pure delight. Charlie plays in the bathtub….
Your research and treatment for EB has made me a better mother. The overwhelming guilt of neglecting my healthy children no longer tortures my soul. I now have time. Time to tell them how much I love them and how incredibly important they are in my life. Time to paint my daughter’s fingernails and do her hair, time to watch my sons grown into handsome young men. Time to get on the floor and play Legos with Charlie. Time to hold Charlie in my arms and actually feel his skin against mine. Feel my hands on his bare back, and his face nuzzled in my neck. You cannot under estimate the importance of actually “feeling” the skin of your child for the first time. This is quality of life. This is what you have created…
"Have Faith Through the Hard Times, believing in more! For there in the journey and stuck in the sting, the struggle....the struggle....is what gives you Wings!" ~ Karen Kingsbury
To sign Charlie's petition for school please visit:
For information on P.U.C.K. (Pioneering Unique Cures for Kids) please visit www.puckfund.org
Written Nov 29, 2012 9:58pmI do not believe that a child should be thrown out from the school district in which they are open-enrolled in because they are fighting to live in a hospital a state away.I do not believe that it is OK to "just have another school system" do it...(home-bound) teaching until a child is ready to return to school full-time. I could easily do that, but that my friends is against everything I believe in.I do not believe that my son was thrown out of his open -enrolled district because of a "technicality", I believe his hospitalization was "perfect" opportunity to rid a school district of a complication...and let someone else handle it.I do not believe that "home bound" education should be a reason that a child can not be re enrolled into a school district. Especially when it is that district who developed the IEP plan AND that the student should never have been tossed out in the first place.I do not believe that it is OK for a Superintendent to falsely state that this "technicality" is out of his hands, and he is "just the messenger."I do not believe that it is OK for a Superintendent to make these decisions without even reading the student's IEP prior. At least know what you are talking about before you call and inform the parents of your plans.I do not believe that a school DISTRICT has the right to take such drastic measures such as terminating their enrollment without informing the student and their family first.I DO Believe in the teachers.I DO Believe in my community.I DO Believe in my children's schools.I DO Believe in the Department of Public Instruction.I DO Believe in my son Charlie. Please help me stand up for him.Sign this petition. Thank you.