Cruel And Unusual Punishment

To Whom It May Concern:

I am a follower and a supporter of Jessica Valik and Jackson Baldwin and am familiar with their plight.  You, I fear, may not be as familiar, so this letter serves to inform and impel you on these several extremely important topics.

To give a concise background on the disease that Jackson Baldwin has is impossible, so I urge you to try to understand the following:

*Jackson Baldwin suffers from Recessive Dystrophic Epidermolysis Bullosa, a horrifying genetic disease that robs him of the connective fibrils and proteins between the two major layers of skin, the Dermis and the Epidermis.

*What this means is this: His skin is so fragile, that it is compared to Butterfly Wings by people trying to describe it.  The children afflicted with this disease are literally called “Butterfly Children,” because their skin is so fragile.  It has been deemed, “The Worst Disease You’ve Never Heard Of.”

*The skin is the largest organ of the Human Body.  It is the first defense against injury or invasion, against bacteria, viruses, against Everything.  Our skin encounters it first, whatever “it” may be.  We take it for granted.  But it is our Armor.  The layers of tissue that protect us from Everything that is out in the World that could injure us or make us sick.  It is our shield against everything.

*These children, the “Butterfly Children,” are deprived of the basic material that is essential for natural life sustenance at the very beginning of their lives.

-Who do you think fills the gap?

-Who do you think makes it up?

-If you don’t know the answer to this, I’ll tell you:

-It’s the Mothers.

*The Mothers of these children become fast experts on wound care, antibiotic names and purposes, and products by the hundred that would make anyone’s head spin—dressing retainers, specialized gauzes in every size and shape, scissors, dressings, compounded by products by the hundred that are thrown at them to “try.”

*Do you know what these Mothers do?

-They stop looking at the medical community because they have watched these treatments try and fail over and over and over again at the expense of their children.  So the Mothers start relying on each other.  Experience has shown them that there is NO replacement for “Practice Makes Perfect,” because THEY HAVE DONE IT.  The Mothers learn more from each other in the middle of the night in online chat groups or Skype calls than they have ever learned from the medical community, as the vast majority of health care providers are unfamiliar with this disease.

-The Mothers know the truth.  Because THEY HAVE DONE IT.

I believe Jessica Valik, and I believe IN Jessica Valik.

So this is our Plea to you, our Hail Mary, our Hopeful Hallelujah.

If you believe Jessica Valik, as I do, please sign this petition.

If you believe in this cause, please make a donation.

 

 

 

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