We sent off labs a couple of weeks ago on Clark to test for a rare metabolic disorder called Hurler’s syndrome. The symptoms are vague in the first year of life, but become more apparent the older the child becomes. He has a few of the vague symptoms and early intervention is essential. Without treatment, children with Hurlers rarely live past 6 years old, and with treatment, some are living into their 20s. It is a life-limiting disease. All week my prayers have been that Clark does NOT have this disorder. I’ve been calling the lab directly to see if the results were in, and at 9:00 a.m. this morning, the lab confirmed that they were resulted. And now, I’m waiting.
Waiting for the doctor’s office to call me with the results. Waiting to know if our lives will be completely uprooted. Waiting to know if a timer has been set on my son’s life.
I’m scared to know what the results are. I’m scared to know whether my son will require a bone marrow transplant thus necessitating chemotherapy. I’m scared that I’ll have to leave my Darcy to be with Clark in the hospital for months. Some people say that it is foolish to “borrow trouble.” We don’t know if he even has Hurlers, afterall. But we will know today, and I’ve made plans. I’ve looked at different hospitals that treat Hurlers and offer bone marrow transplants. I’ve thought about how we can make it work living apart from one another as no hospital in Baton Rouge can treat this syndrome.
I’m praying constantly that this is not going to be a part of our story. Please pray with me, for guidance and strength. I will update very soon. Love to all ❤