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"The national park service advises hikers to take 7 days to complete the 72 mile trek along the Appalachian Trail from its entrance in the southern end of the Great Smoky Mountains National Park to its exit on the northeastern end. I will be hiking the 72 miles in 72 hours or less to raise $72 dollar donations for Ben Jr. Check out Ben’s Facebook page below. EB is an awful disease and by sponsoring me $72 you will be helping an amazing little boy fight this disease! If you are not able to afford the donation than please post this on your wall and spread the word. Let’s make a difference today!"
Benjamin Joseph Wiley, Jr. was born on Oct 27th, 2011. Though it had
been a normal, healthy pregnancy and delivery for Ben and his mom, it
was immediately clear that something wasn’t right: baby Ben was
missing the skin on his hands and his left foot, and had blisters in
his mouth and on his lips. Doctors at the DeSoto Memorial Hospital in
Arcadia, Florida where he was born had never seen a child born like
this before, and did know how to treat him. Baby Ben was immediately
rushed to All Childrens’ Hospital in St. Petersburg by ambulance,
since the wind was too strong for an emergency flight.
Teams of doctors worked around the clock to treat Ben at the All
Childrens’ Hospital NICU. He had to have special diapers, special
treatment of his wounds … it was hard to find anyone who knew how to
care for him. He was fed through his belly button until his pain could
be controlled enough to give him a bottle, and even then the bottle
nipple had to be covered in aquaphor/vasoline to stop blisters from
forming. A layer of Aquaphor was kept all over his body in order to
prevent any friction against his skin, because any friction against
his skin at all would shear off the skin or create a blister that had
to be popped and would leave a severe wound. He was the only baby that
the hospital had seen born with his condition.
Ben Jr. was seen by over 19 doctors (plastic surgeons, GI
specialists, dermatologists, skin teams, radiologists, a respiratory
team, and neonatologist). They took skin specimens and on Nov 8th
doctors diagnosed him with Epidermolysis Bullosa (EB). In a nutshell,
EB is a connective tissue disease causing blisters in the skin and
mucosal membranes, with an incidence of 1/50,000. Its severity ranges
from mild to lethal. It is caused by a mutation in the keratin or
collagen gene. People with EB lack these protein anchors, so when
there is any friction on the skin, the two layers rub against each
other and separate, resulting in painful sores and blisters.
In it mildest form the blistering is confined to hands and feet.
In its severest form the whole body is affected, wounds heal extremely
slowly, there is significant scarring, physical deformity, and
disability. In its severest form EB is fatal in infancy. People with
severe EB have a significantly higher risk of developing skin cancers.
The term Butterfly children is sometimes used for younger
individuals with EB, because their skin is said to be as fragile as
the wings of a butterfly.
EB affects both males and females equally, as well as all ethnic
groups. EB is incurable and treatment focuses on relieving the
symptoms of pain, infection risk and some other potential complications.
There are three main types of EB:
EBS- Epidermolysis
Bullosa- Simplex
DEB- Dystrophic Epidermolysis
Bullosa
JEB-Juntional Epidermolysis Bullosa
*there are over
25 known EB forms.
Ben Jr's first biopsy was inconclusive as to the type of EB. It
was not until September 20, 2012 that we received our son’s diagnosis
with the worst type of EB – Junctional Epidermolysis Bullosa (JEB-NH).
At this time we are going to have more testing done in order to know
exactly what type of JEB-NH Ben Jr. has.
Baby Ben blisters every day, with all types of blisters: all
over his body, head, scalp, mouth, throat, legs, arms, fingers, feet,
toes, butt, private area, ears, neck, chest, and back.
He never gets a break and neither do we. He has not only brought
us closer as parents, but he has taught us the true meaning of life.
They say there is no cure, but we know that there is a cure and we
trust that one day he will be completely healed by the blood of the
Lamb! The Lord has healed our son, beyond anyone’s expectations for
him already. He is a miracle in the making. Please join us in
spreading the word about EB & celebrating our son's life, &
the everyday obstacles that our son overcomes.
Ben Jr.’s bandages have to be changed daily. Supplies are always needed!
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