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Help Ben Jr and family with Medical expenses
Ben Jr is facing infections right now, that means extra needs have to be met, the family will be traveling in the next few days and any donation will help them on this journey. Ben Jr is to have a cell transplant on his left foot, if this is done on Friday then the family will have to stay in Miami Florida for a week or longer. Tight now a Ronald McDonald room is not available. So they will have to stay in a hotel. Please take a moment and help, no amount is to small. God Bless!
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.
To continue testing to discover Ben Jr.’s exact type of EB, which will better inform his doctors about how best to treat him, we need to travel to University of Miami Miller School of Medicine, that is about a 4 hr drive that involves days off of work and the cost of staying in a hotel, food, and needs along the way. Not to mention Ben Jr has 2 older sisters.
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.
To continue testing to discover Ben Jr.’s exact type of EB, which will better inform his doctors about how best to treat him, we need to travel to University of Miami Miller School of Medicine, that is about a 4 hr drive that involves days off of work and the cost of staying in a hotel, food, and needs along the way. Not to mention Ben Jr has 2 older sisters.
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