Brave Josiah Fights EB
Donation protected
Our handsome nephew Josiah was born on October 5, 2018 and what should have been the happiest day of any parents life ended with an incurable diagnosis. He was born with a very rare genetic disorder called EB or Epidermolyosis Bullosa. After Josiah was born he was rushed to Dupont due to having open sores on his hands, legs, and sores around and in his mouth. He is remaining in the NICU for wound care. EB is always painful, often pervasive and debilitating. The pain management and bandages will be needed for life. Josiah is currently awaiting genetic testing results to determine the severity of the disease he has.
Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available. (See more at: http://www.debra.org)
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly.
Josiah is going to need silk onesies, special diapers and bottles, and special detergent because of his extremely fragile and sensitive skin among other items. As he gets older these everyday costs will only increase, as will his medical care. Josiah is a happy and healthy baby. He has taken his wound dressing changes like a champ. He LOVES being with Mom and Dad. I would to as they are fantastic parents.
We ask for continued support and prayers for Josiah’s physical healing and Mom and Dad’s emotional healing. Josiah is certainly a miracle baby and a handsome one at that! The future is unknown as of now and while it will be a long road ahead, Mom and Dad thank you for any prayers and thoughts you can send. Any support also will be greatly appreciated and will help in traveling expenses and Josiah’s medical care. We will keep you posted as we learn more.
Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available. (See more at: http://www.debra.org)
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly.
Josiah is going to need silk onesies, special diapers and bottles, and special detergent because of his extremely fragile and sensitive skin among other items. As he gets older these everyday costs will only increase, as will his medical care. Josiah is a happy and healthy baby. He has taken his wound dressing changes like a champ. He LOVES being with Mom and Dad. I would to as they are fantastic parents.
We ask for continued support and prayers for Josiah’s physical healing and Mom and Dad’s emotional healing. Josiah is certainly a miracle baby and a handsome one at that! The future is unknown as of now and while it will be a long road ahead, Mom and Dad thank you for any prayers and thoughts you can send. Any support also will be greatly appreciated and will help in traveling expenses and Josiah’s medical care. We will keep you posted as we learn more.
Organizer and beneficiary
Kelly Starner Spennato
Organizer
Wilmington, DE
Cristina Spennato
Beneficiary
