Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LO-sah) is a group of skin conditions whose hallmark is blistering in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape and baby Quinn had one of the worse forms of it, "Herlitz junctional epidermolysis bullosa (H-JEB) is an inherited disease that causes severe blistering on the skin. Infants with H-JEB frequently also have internal blistering on the lining of the nose, mouth, esophagus, trachea, rectum, stomach, intestines, and eyes. These symptoms are present from birth. Occasionally people with the disease survive into their teens, however 87% die in the first year of life." *
Junctional Epidermolysis Bullosa – Herlitz
Junctional Epidermolysis Bullosa – Herlitz
. Quinn spent most of her life in the University of Minnesota Amplatz Children's Hospital. You can read her story here http://www.quinnscrusade.org/quinns-story-2/ Please consider to this worthy cause. We will be letting you know the date and time of the lemon aid stand if you prefer to give that way. I believe this will be a good experience for my grandson (and the neighbor kids who are helping him) on giving of themselves on behalf of others. I am happy to think of how this chapel will bless so many ill children and their family and friends.We are going to start baking cookies for the sale this week while it is so nice and cool out. The cookies we have chosen to make so far are Chewy Chocolate Chip, Snickerdoodles (he choose that one due to the fun name, had no idea what they were, lol) and Ginger Snaps.
Chewy Chocolate Chip Cookies
2 1/4 c flour
1/2 t baking soda
2 eggs
1 c butter
1/2 c sugar
1 c packed dark brown sugar
1 t salt
1 t coffee ground to a powdered
2 c chocolate chips
mix all ingredients together well and drop by even sized spoonfuls onto a cookie sheet. Bake at 350 degrees until cookies are golden around the edges, but still soft in the center, 8 to 10 minutes.Remove from oven and whack the bottom of the cookie sheet on the counter to flatten the cookies. Remove from the cookie sheet and cool on a rack. Better to under bake the cookies a bit than over bake if you want a softer cookie.
Snickerdoodles
1 1/2 c sugar
1 c butter (or 1/2 c butter and 1/3 c coconut oil)
2 eggs
2 3/4 c flour
2 t cream of tarter
1 t soda
1/4 t salt
Mix well and then roll into 1 1/4 inch balls and roll into a mixture of
1/4 c sugar
2 t ground Cinnamon
Place on cookie sheet and bake at 400 degrees for 8 to 10 minutes. Cool cookies on a wire rack.
Ginger Snaps
1 c butter softened
1 c packed dark brown sugar
1 c sugar
1/2 c molasses
1 egg
3 c flour
2 t baking soda
2 T ground ginger
2 t cinnamon
1/2 t ground alspice1/2 t salt
heavy pinch of ground cloves
1/4 t ground black pepper
Mix dry ingredients together first then add remaining ingredients and mix well. Form into small balls (less than an inch) and roll into sugar before baking. Bake at 375 for 8 to 10 minutes (they should puff up and then start to deflate that is when they are done) cool on a wire rack.
Lemon Aid made ahead of time
2 c sugar
1 c water
Cook till sugar is dissolved and bring to a boil. Cool to room temp and add
1 c lemon juice
zest of a lemon
let sit over night and strain out lemon zest and add 1 gallon of water, mix well and serve chilled or over ice.
* https://www.counsyl.com/diseases/herlitz-junctional-epidermolysis-bullosa-lamb3-related/
Epidermolysis Bullosa
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