I am a first-time Grandma to Logan. He was born in June 2025 in Colorado Springs, Colorado. When he was born, he had a tiny blister on the top of his hand. My daughter Madisen noticed it right away and asked the nurse what it was. The nurse said it was most likely from him sucking his hand in the womb. We honestly didn't think much of it because every ultrasound we saw, Logan had his hands by his face.
When Logan was seen for the first time by his pediatrician, my daughter asked about the blister and the pediatrician said she had never seen anything like that. My son-in-law is in the United States Army so Logan was seen on base at Fort Carson.
My son-in-law took a work assignment in Oahu, Hawaii a year before Logan was born, so we knew in August 2025, they would be moving. Before they left, Logan developed blisters on the back of his heels, his pediatrician said she wanted him to see a dermatologist but knew they were moving to Hawaii so didn't set up the referral. The blisters got worse in Hawaii, he started developing them on his fingers, feet and toes.
I went to Hawaii in September 2025 and Logan had a blister on the bottom of his foot between his big toe and second toe. It was fluid-filled and the size of a small bouncy ball. We decided to take Logan to urgent care and the Nurse Practitioner said it looked like impetigo. Logan was given antifungal cream and oral medication. The blister popped and we kept it clean and covered.
Logan was seen by his new pediatrician in Hawaii who sent a referral to a Dermatologist. When they called my daughter and they said they had an appointment in February of 2026, my daughter called me in tears. I told her to call the insurance company, explain the situation and see what they could do. Madisen was given phone numbers to other dermatologist offices to call for an earlier appointment. Logan was seen by a Nurse Practitioner at a Dermatologist office in October 2025, they were given three possible diagnoses, Epidermolysis Bullosa, Bullous Pemphigoid and Bullosa Lupus. The Nurse Practitioner sent a referral for Logan to the one and only genetic doctor on the island.
Two weeks passed and no one called to set up the appointment. My daughter called multiple times; twice being told they never got the referral.
Logan's blisters were getting worse, spreading to his ankles, knees and more were developing where he already had gotten them, and he started to show signs of pain.
On the last week of October, my daughter and son-in-law agreed that Madisen and Logan needed to return to Colorado for care. They got back to Denver in the first week of November and were seen at The Children's Hospital Dermatology Clinic one day later. I attended the appointment with Madisen and Logan, but unfortunately my son-in-law had to stay in Hawaii. The doctors and nurses at the Epidermolysis Bullosa Clinic at Children's Hospital of Colorado were amazing. Every one of them came into the room to introduce themselves and meet Logan. Dr. Anna Bruckner told us she believed Logan has EB but would need to do a genetic test to confirm his diagnosis.
On Friday November 21st, Logan's genetic testing results came in confirming he has Recessive Dystrophic Epidermolysis Bullosa.
The biggest challenge we have faced is the lack of symptom awareness about EB. From the day Logan was born, he had a blister; I feel like nurses and pediatricians should be educated on the smallest signs and symptoms of EB. I wish people knew that the signs and symptoms of EB are not always large skin loss. The smallest blister can mean so much more, and getting an early diagnosis is crucial.
We continued to self-advocate until Logan got his genetic testing done.
Receiving a new diagnosis of any kind as a new parent is challenging. Receiving a diagnosis of RDEB is heartbreaking. debra has been an amazing resource as we navigate this new life. We have learned a lot about treatments available for Logan's Recessive Dystrophic Epidermolysis Bullosa and this gives us hope.
- Marcie, Logan's Grandma
debra of America is proud to support Logan and his family. We are committed to improving the lives of those impacted by EB through direct-to-patient programs, education, advocacy, and research.
Your support ensures that families receive the resources they need, from their first box of wound care supplies to ongoing care, education, and community.
