Rare Disease Day Update

It has been a while since we have updated you on Gage, and I know that some are asking what has been happening. Well, it is Rare Disease Day, so what better time is there for an update? The other day, a very nice young lady from the ECD Global Alliance called me (well, she actually called Gage). She wondered if Gage would be willing to participate in a study conducted by a doctor specializing in Erdheim-Chester Disease. I told her that Gage was only three, and she was caught off-guard and didn't know what to say. She couldn't tell if I was joking or not, but when it was apparent that I was not joking, she changed her tone. She started to ask questions because he was so young, and they do not usually see children this young with ECD. ECD is rare but very rare for children like Gage.

Rare Disease Day is a day that recognizes over 300 million people who are living with what has been determined as a rare disease. Many of these do not have cures and do not even have a diagnosis. When we stayed at the Ronald McDonald House a while back, we met a little girl with a rare condition doctors didn't understand. The little girl has been going back and forth to Mayo for years (she was only 5) for shots because her stomach (or another part of her body) would stop working. Her story is just one of the 300 million people living with a rare disease. Gage is another, and we are thankful that Gage's disease has a name and that there is a community of people who are walking through it who support each other. Even though we might not ever know other parents who have a child Gage's age with ECD, it is helpful knowing that he isn't alone. It is a bit unsettling knowing that while Mayo has some of the best doctors in the world and adults with ECD travel a long way to go there, there have been no children diagnosed with ECD at Mayo. There are a lot of unsettling things. I could tell you how I read the eight-page document about the medication that Gage will be on. I won't. But like everything else, we are thankful that there is a medicine that will target cancer in Gage's body, but there is a lot about it that is... unsettling (to use the same word over and over again). We know we have direct access to the Great Physician, who controls all this. While all of this seems so unsettling, we confidently rest upon the unwavering foundation of Christ Jesus, who has Gage in the palm of his hand.

We are heading to the Mayo Clinic on Sunday because we have appointments starting on Monday. Gage will see his oncologist, and we will add a new doctor, a cardiologist.

We plan to start his treatment. We have most of the insurance mess behind us. We had applied for a child's disability program in South Dakota (a program that we were told from several directions that Gage would qualify for) but, after three months, were denied. Again, we trust that the Lord knows what is best. When the Lord closes a door, we trust he will open another one. In this case, being denied from this one program opened up the enrollment period for Gage to get on a plan through the Affordable Care Act. We had some great help walking through that process and figuring out what plan would work the best in Gage's case. Thank you all for praying; we know the Lord has been working through the waiting.

Thank you all for the prayers and support! We continue to be overwhelmed by it. Here are the top three things on my prayer list for today: 1. That little girl I mentioned earlier. 2. The medicine. I pray it works and there will be little or no side effects (and the insurance pays for it without a fight). 3. Our appointments. We pray for wisdom as we listen and ask questions. There are many more, but we will leave them there.

"And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock." ~ Matt. 7:25