Jayden’s Story

Jayden was born two years ago with a rate genetic skin condition called Epidermolysis Bullosa (EB).  He is missing a protein that enables the layers of his skin to adhere.  As a result any friction, bumping, rubbing causes his skin to blister.  There is no cure for EB.  The treatment is aimed at preventing infections, pain management and symptoms management.  Due to the fragility of his skin he has generalized wounds similar to second degree burns that require continuous bandaging/wound care.  He gets internal blisters like in his esophagus, mouth and airway.  He is at a high risk for skin infections because of the open wounds that he has.

From birth to about 18 months old, Jayden has had over six hospitalizations.  At times he would get blisters in his upper airway that caused partial blockage of his airway requiring for him to be in the Pediatric Intensive Care Unit.  At two months old, he required surgery to have a tube for feeding inserted because the blistering in his mouth prevented him from being able to be bottle-fed.  Since then he has not been able to eat or drinking anything by mouth.  

Jayden is a very fragile child that requires gentle handling.  His condition is so severe that since he was born, Jayden’s father and mother made the decision that his father would be his main caregiver and his mother would continue on with her career as a nurse.  The blisters on his skin have to be lanced in a timely manner to drain the fluid inside.  If not, they will grow larger in size causing bigger wounds.  Taking care of him is a full-time job because of his special needs.  He receives wound care management every other day taking about three and a half hours to be done and sometimes more often.  Before the wound care takes place, he has to be soaked in a tub full of water mixed with bleach or vinegar.  It is a very painful process.  

As a result of his physical disability, Jayden has bad anxiety.  The sight of water in the tub or the sight of needles causes him to cry.  Pain and itching is a constant problem which prevents him from getting enough sleep or enjoying the day-to-day activities of children his age.

Though Jayden’s parents have private insurance, there are many expenses that aren’t covered by their insurance.  Once a year, Jayden and his mother make a trip to Cincinnati Children’s Hospital, where he is seen by doctors from different specialties who give them recommendations for his care.  Despite it all, he has a beautiful smile!

 

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