Felix’s Fight with Epidermolysis Bullosa

On January 4, 2022, Felix Asher Jean was born with a large blister on his left hand, both heels, and in his mouth. His parents, Erin and Travis, had few answers from medical professionals but knew something was very wrong. More blisters had appeared in the hours since his birth. Felix was transferred to Massachusetts General Hospital (MGH) for a secondary opinion and more importantly a diagnosis.

After a skin biopsy was performed at MGH, medical professionals received preliminary results. Felix has an incurable, genetic, dermatologic disease known as epidermolysis bullosa (EB). Epidermolysis bullosa is a group of rare disorders that cause the skin to blister from minor trauma and even touch. Some cases, like Felix’s, even cause blistering to the moist membranes of the mouth, throat, and stomach.

There are four subtypes of EB: simple, junctional, dystrophic, and Kindler. The severity of symptoms can vary from mild to debilitating. The most common symptom with all types of EB is pain. There is an increased risk for infection from the open wounds. It can impact mobility, vision, nutrition, and breathing as well.

Felix currently requires pain and sedation medication to get through dressing and diaper changes. His breathing becomes labored at times because of the lesions in his mouth which require nebulizer treatments and supplemental oxygen. He has a catheter that leads to his heart which allows for the administration of his pain medication as well as intravenous nutrition. He is working hard on eating but sores in his mouth make it difficult.

We are waiting for formal results from Felix’s biopsy and a genetics screening that will determine which type of EB he has. The results could take weeks or even months and are necessary to determine how we can best care for Felix and what his future will look like.

Felix undoubtedly has a long road ahead which includes more time in the hospital and many medical bills. Any and all support is greatly appreciated by his whole family. Thank you so much for your support!