Ryan was born with a rare genetic skin disorder called Junctional Epidermolysis Bullosa (JEB or EB). This disorder is characterized by a missing protein in the skin that is vital in adhering the layers of skin together. Simply put, Ryan lacks the 'velcro' that keeps his skin together. There are several different "forms" of EB, and they are described by severity of the condition.
Ryan has a moderate to severe form of EB. In Junctional EB, the protein in the middle layer of the skin is absent. Because of this, he can be afflicted with deep blistering and wounds, which are often painful. In this type of EB (and most others), it is very difficult to heal, so many children and adults suffer from chronic wounds.
People often ask me why Ryan can’t walk, or why he has a tracheostomy, or why he has a corneal abrasions. They also ask me about his genetic condition and wonder how a skin disorder could possibly be so severe. I hear things like “his skin looks so good”! Well. That may be true for some of his body, but the truth is, what is covered by his UnderArmour clothing is absolutely horrific.
Remember that the skin is the largest organ of the body. It has several layers of tissue that guards the underlying muscles, bones, ligaments and internal organs. Ryan is missing the protein that makes the glue to hold these layers together. This impacts every facet of his life and body. Internally and externally. It is the reason why I’m constantly looking for good help, the reason that I had to reduce my work hours, the reason I don’t ever sit down!!!! It’s the reason Emmy struggles for my attention and the reason that relationships are slow to blossom. It’s the reason some days I don’t want to talk, and it’s the reason I am a staunch advocate for Ryan at every turn and transition in life.
We were told Ryan would likely die from his junctional epidermolysis bullosa by age 1. He is almost 12. Simply put, his perseverance, strong will, determination and sheer joy in music, animals, cooking and LAUGHTER have kept all of us going.
Player Name: Captain America
Start Date: 2007
Rank: Purple Heart Recipient
Level: Super Top