New Diagnosis, the one we feared

On November 1st Lily had a muscle biopsy along with her g tube and iv port placement. We have been holding our breath for the results hoping for an answer to why Lily has had so many complications. The biopsy would tell us if she had something wrong in her DNA or hopefully rule out some very scary, very serious life changing and life ending diagnosis'.

Friday morning I woke to the phone ringing. It was the Nurse from the neurologists office calling to tell us they got the biopsy back. The doctor wanted to see us to explain the results but she could tell me that the results said "suggested Mitochondrial disease". My whole world came crashing down in one instant. I couldn't breathe.I wanted to scream, to run as far away from this information as I could. I wanted to UN-hear what I had just heard. I knew what this result meant. I had done hours and hours of research. I had suspected this disease, but it was the one I feared the most. I also knew that this result alone wasn't always enough to diagnose her but added with all her other diagnosis' and the fact that her serum ck levels were elevated.... It couldn't be anything else.

Mitochondrial disease (Mito) affects the bodies ability to convert food, vitamins, etc. into energy. That energy is what makes our brain function our heart beat, our skin grow, our muscles stretch and contract. EVERYTHING in our body requires energy. Mito patients don't produce the energy needed for their body to function properly. That is why she has so many seemingly unconnected diagnosis'. Mito is progressive and gets worse, and worse over time. There is no cure. The only treatment is special vitamins and treating individual symptoms as they occur.

The prognosis is different with every individual, some children live to be 2 or 3, some live to be 25 or older.  But as is the case with every progressive disease, the disease eventually wins.

I have had a few months to prepare myself for this I knew it was a possibility, but to have the possibility realized is crushing at the very least. I don't want this! I don't want to see my child get sicker and sicker until she can't fight anymore. I want her to LIVE. I want her to have all the things a parent naturally expects for their children. I want her to eat food. Drink water. walk, run, skip and play. I want her to be able to get a mild fever and NOT have it be life threatening. I want her to grow up get married have kids and see her Grand kids.

I am NOT without hope however. Not all of the things I want for her are lost forever. She could walk, might even run. She might one day be able to eat. I will search for a cure. We will go wherever the doctors who specialize in this are. Plus, I KNOW through God ALL THINGS ARE POSSIBLE! He can heal her IF it is what He chooses to do. Just Like Jesus healed so many while He walked this Earth, She could be healed. I can only have Faith and pray for her and then accept Gods will WHATEVER it may be. I trust Him with all my soul. I will put my Faith, hope, and her life in his hands.