A “Super Hero Kid” Living with a Difficult Disease

John Hudson Dilgen, an 11 year-old boy living with a genetic skin disease called Epidermolysis Bullosa, was recently featured on the popular daytime talk-show, “The Doctors.” During the show, Dr. Jim Sears surprised John and his family with an array of gifts including a $5,000 gift card from CVS/pharmacy to help cover the cost of his medical expenses. We spoke with John’s mom, Faye, about her son’s bravery and her experience with helping John live life to the fullest while providing much-needed care for his illness.

All Kids Can Blog: What is Epidermolysis Bullosa (EB)?

Faye Dilgen: Epidermolysis Bullosa (EB) is a rare, genetic skin diseases caused by a lack of a protein called Collogen VII. This results in extremely fragile skin, which blisters, both internally and externally, and flakes off easily.

AKCB: When was John diagnosed with EB?

FD: To our surprise, John was born with no skin on his feet and left wrist. John spent the next nine days in the N.I.C.U. while a biopsy was done which determined he had Dystrophic EB, one of the three major types of EB.

John’s diagnosis of Recessive Dystrophic Epidermolysis Bullosa (RDEB) was confirmed when he was 16 months old. RDEB is one of the more severe forms of EB. It is characterized by a loss of fingernails and toenails, anemia, failure to thrive, and difficulty eating and swallowing. Blisters also affect the eyes, mouth, esophagus, as well as the internal organs.

AKCB: How is John’s day-to-day life different than that of other children? And, how is it the same?

FD: John’s day-to-day life is different in that it involves constant wound care, special baths and bandages, continuous pain and many medications. He has to be careful with things that could cause him more wounds and even more suffering. 

But, it is the same in that he is otherwise a normal 11-year-old boy who loves to play games with his friends and have a good time.

AKCB: How does John explain EB to his friends, and are they understanding when it comes to the difficulties of having EB?

FD: John’s friends have known him for many years, and we believe their parents have explained John’s disease to them to help them understand. They are often very helpful by carrying things for him, opening drinks and pushing him in his wheelchair. They are understanding and extremely supportive.

AKCB: What activities does John enjoy doing with his friends? We also heard John is able to ski competitively, that’s amazing!

FD: John loves to watch hockey and play computer games with his friends. And yes, John loves skiing and it is truly amazing to watch. About six years ago, a dear friend of ours who skis told us about the Adaptive Sports Foundation at Windham Mountain in New York. John was extremely interested and he has been skiing on a bi-ski at this mountain ever since. We try to go once a month, every single winter.

AKCB: Who does John view as a role model?

FD: John is a super hero kid. For obvious reasons, he’s drawn to movies and games that highlight characters that are able to overcome obstacles, which I think is motivating and fun for him to see. Lately, his favorite fictional character is a hero named Winter, a dolphin from the movie Dolphin Tale.

AKCB: What has your family’s experience living with EB taught you?

FD: Every family fights a different battle. Our issues with EB may be different than those of other families, but not better or worse. We all struggle, and we have to lean on each other to pull through.

AKCB: Please tell us about the support your family has received from the community, and how has it made an impact on your lives?

FD: Our community has been a backbone for us in so many ways. Community support is key to getting through the daily struggles when you have a child with special needs. They have made a significant impact in our lives and we try to remember to always let them know how much they mean to us.

I also want to say how amazing our CVS pharmacists are. They go above and beyond to make our lives easier and to ensure John receives the medications and at-home treatments he needs, which are both critical and labor intensive. Their constant smiles are a blessing, and we are eternally grateful for them.

AKCB: If you could give one piece of advice to parents raising a child with EB or a child struggling with an illness or disability, what would it be?  

FD: Accept help when you can, and make sure to take time for yourself so that you can take better care of your child. Also, take the time to enjoy the everyday miracles. We always rejoice in the little things that John is able to do and all that he enjoys.

All Kids Can thanks Faye Dilgen for sharing John’s inspirational story, and for reminding us all to focus on the good and “rejoice in the little things.” 

Blog: A “Super Hero Kid” Living with a Difficult Disease