Dare to Live
We have all heard motivational sayings that are meant to help us feel better about whatever ailment or adversity comes our way. Many times the attempts that others make to help us feel better succeed. Other times they don’t help and in fact they irritate us. After all we, are the masters of our own destinies. We are the only ones who can make the decision as to whether we will succumb to the obstacles we face in life or use them to make us stronger.
That all sounds good and it may even be poignant in many cases. The subject of today’s post has temporarily imploded my usual positivity. I am confident that this will not remain the case because maybe just maybe we can help to make a difference for one very special child by the name of John Hudson Dilgen.
This is the story of eleven-year-old John Hudson Dilgen who has a rare skin disease called Epidermolysis Bullosa or EB. The disease is cruel and it ravages the delicate skin of the people who are afflicted with it. EB makes the skin so fragile that even the slightest bump or touch can rub the skin off and cause blisters and great pain.
Every morning John Hudson Dilgen must have a bath and his dressings changed. The process is pure torture for him. Each bandage must be removed and then his skin must be rinsed with bleach or vinegar to kill the bacteria that has grown on his skin overnight. After that excruciating process is over, antibiotics and moisturizers are applied. He has wounds covering over 50% of his body and he must wear special bandages continuously.
Therapists come to work with John’s hands, feet and mouth which are often blistered and painful. He cannot eat or drink until the blisters on his tongue have drained. There are often blisters in his eyes, which are the most agonizing of all of the wounds. There is no treatment for the corneal erosions. He must keep his eyes closed and take pain medications until the erosions heal.
There is so much more to John’s story. Please check out his site and spread the word about EB. If you are so inclined, you can send a donation to help fund research for Epidermolysis Bullosa. As we give thanks for all that we have this Thanksgiving, let’s do something to help John’s dream come true. It’s a simple dream. It is a dream about a day in the future when he won’t have to suffer in such excruciating pain.
The following is from http://www.johnhudsondilgen.com/
“We are waiting for a day free from pain and suffering and worry. There is no cure for EB at this time, only bandages and pain medications.. Research going on in Stanford Ca. will go to human trials in a few years and may have hope of a treatment for RDEB. Until then, we are spending our days praying for a cure and hoping I survive the infections and anemia of childhood. I need a cure well before my first bout of squamous cell carcinoma, as this will surely kill me. If it is in your means, please help spread the word about EB, help increase EB awareness, visit my website for updates on me. Please remember me and my other EB friends in your prayers. Tomorrow is another day and my family continues to hold out hope for a better day for me.” ~ John Hudson Dilgen
To get involved, contact Faye at firstname.lastname@example.org.
“We never stand taller than when we kneel to help a child.” It goes without saying that John is our newest hero on our Wall of Heroes. Please keep him in your prayers.
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