If you read my blog posts, you will probably remember this family. When I did their newborn pictures, it was bittersweet because the 29 year old father is battling stage four colon cancer that has spread to his liver. You can read about him in that post HERE. That, in itself, is utterly horrible. And I remember thinking, “I’m glad they have a son, a piece of the father.” Because this family really touched me, I joined their FaceBook page for Team Ryan, so I could see their updates on his fight. Well, only a couple weeks after our newborn session, baby Miles is in the hospital with kidney failure! It turns out he has a very rare disease – Primary Hyperosaluria, a condition found in only 1 in 3 million people. It is the lack of a specific enzyme in the liver. So while he will never be in liver failure, this does cause kidney failure, dangerously high blood pressure, seizures, and can also create a buildup of an enzyme on the eyes, resulting in blindness. Overwhelmed? Just imagine his poor parents. The good news is that it is completely curable with a liver transplant. The bad news is that he has to wait until he is about 22 pounds which will most likely be between 12-15 months of age. He is only four months old right now. So for now, he is in and out of the hospital because of his blood pressure and gets dialysis a couple times per day at home.
This family’s struggles are beyond what one family should have to endure, especially with such young loved ones. Because I am helpless to really help them, I offered to do a quick holiday mini-session for them. It was the least I could do. I was hoping there would be time while both of her boys were out of the hospital and feeling well enough to come into the studio. I’m so glad we were able to make it work!
If you are now also wanting to follow their story and struggles, you can keep up with them on their Team Ryan Facebook page. And because I know they would never, ever ask themselves, if you feel moved to donate money to help with their medical costs, you can donate HERE.
I really hope that the next time you see this wonderful family on my blog, we can share better news. But in the meantime, I want them to know that while theirs is a personal and private battle, they have an army behind them. Merry Christmas!