the diagnosis

Things have been very busy around here since Christmas. Greyson was admitted to the hospital on his birthday, January 4th, for pneumonia. While we were there his neurologist came to see him as she often does when he is admitted. She had the long awaited genetic test results. I thought that it would be another dead end, as usual, but this time there was big news. They had found a diagnosis. The condition is called Nemaline Myopathy. It is very rare, in fact there are only 143 cases of it in the world right now. The condition is typically genetic, and therefore the rest of our family will need to be tested for Nemaline Myopathy. There are different onsets of the condition. Infant, childhood, and adult. Childhood, and adult onset usually shorten the lifespan, by 10 years or so, and the symptoms are generally mild. Infant onset is the most severe, and is usually fatal. Of the 143 cases 27 are infant onset. Most of these babies have died. The infants usually die in the first year. However, if the baby can make it past that first 2 years of life, the symptoms typically diminish, and the child can live a fairly normal life, with a normal lifespan. It's incredible that this information came on his first birthday. The doctor told me that the reason he is still alive is because of all the preventative treatment that we have done for him. I know that all the prayers and faith of our friends and family have been the biggest factor in his survival. We have worked hard to get him this far, but we can't do everything. Luckily the Lord makes up for what we can't do, through the prayers and faith of loved ones. It is nothing short of miraculous the way the Lord works. If we had known the diagnosis from the beginning we would have given up. We would not have been aggressive with preventative treatment. We would have just made him comfortable assuming we would loose him in that first year. Because we did not know, we fought hard. There have only been 4 babies to survive this on record right now. He will be the 5th, if he survives. Through prayer and faith the Lord has lead us in the direction we need to go each day. Whether it be the hospital or treatments at home, it has worked. The doctors, and physical therapists are amazed at his progress. He is getting stronger each day. We continue to work with him, and he continues to fight this uphill battle. There has never been a more sweet and strong child as Greyson, in my eyes. He fights through numerous uncomfortable obstacles each day with no complaint. He is a wonderful, amazing child who teaches everyone who comes in contact with him the lessons of patience, perseverance, and love. We hope and pray for the best outcome. Your prayers are greatly appreciated. Thank you all for your service and love, we could not do this without you. We have learned so much from this sweet spirit already, and hope to be graced with his presence for many years to come.