- Pin it
- SubscribeUnsubscribe
- Embed
Sirena Wiley hasn't added a story.
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.
Highlights
See all activity6Activity
Delete media item?
Delete this item from the media gallery? It will also be deleted from any related story update.
Set as ?
The campaign video will appear in social media and email.
The campaign cover picture will appear in social media and email.
The will appear at the top of your campaign page and in social media and email.
Reset ?
It will be removed from the top of your campaign and won't be used as default in social media and email. The will remain in the media gallery.
Embed
Share a link
Delete update
Delete this story update?
Any pictures or videos will remain in the campaign's media gallery.
Report campaign
Report submitted
Thank you. We take reports like yours very seriously. Our goal is to keep the community safe.
Please know that we may contact you for more information, but that we won't notify you personally of our decision. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Thank you. We've already received your previous report. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Tell us about the problem. Please fill in both fields below.
Record a video
Upload a video
Nothing grabs attention for your cause like a personal video. Take a minute or two to record one now. Record a short video message of support. Or upload one from your device. You can preview or redo your video before you post it.
Nothing grabs attention for your cause like a personal video. Upload a short video message of support. Upload a short video message of support. Or record one right now.
- Most effective video length: about a minute.
- Maximum length: 5 min.
- You can preview or redo your video before you post it.
Heads up! The existing video will be replaced.
Email your friends
Join our team
Tell people why our cause matters to you. Your personal message will encourage others to help. Easy, effective, optional.
Say it in video
Short personal videos by supporters like you are incredibly powerful. Record one right now and you'll help us raise more money. Easy, optional, effective.
Add a personal goal
Set a personal fundraising goal. You'll encourage more contributions if you do. And rest easy. There's no obligation to achieve your goal or bad consequences if you don't. Easy, optional, effective.
We have a video!
Video thumbnail
We'd love to show you our campaign video. Want to take a look?
, you're already on the team.