School Community Rallies Behind Ryan During Prolonged Hospitalization
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.
To be offered a chance to take an investigational drug that may impact all of this is beyond amazing. To think about how we can make a positive shift in not only Ryan’s life, but the lives of other friends who are affected by EB makes me smile. It’s really early and I have zero expectation. Has it been a cure? No? Do we see a slight improvement...I think so...But what it provides us with is HOPE.
Attached are photos that show some improvement. Yes, improvement. It’s that bad. And this is a depiction of about 1/10th of the wounds on his body.
Thank you all for your continued support and love ❤️