Thursday, March 21, 2013
I wonder if it is better to set high expectations and maybe fail or to stay grounded and be pleasantly surprised? It has been about a month now that Cali and Ryann were diagnosed. So far we know that Rick and I share a recessive gene, together the gene becomes dominant and each of our children has a 25% chance to inherit this mutated gene. Cali and Ryann both inherited this mutated gene are affected by the rare disease. Their diagnosis: a very rare type of mitochondrial disease called Complex 1 Deficiency. Basically, their mitochondrial (the organ inside each cell) is lacking a certain protein to have the energy to function properly. This would explain their extreme developmental delay. What a crazy relief after 14 years to have some answers as to why two of our beautiful girls cant walk, talk or run. It breaks my heart everyday to watch them struggle to do such simple things. Its so hard as a mom to keep focused on the positive and know that they are happy and healthy when all I want it to see them grow up and have the same opportunities as their sister. Raelyn is such a good little athlete and as we watch her swim, play softball and tennis I cant help but think it isn’t fair for Cali and Ryann. I know that God gives us what we can handle and trust me I am VERY thankful that they are healthy and I know it could be worse. Still, of course I want the world for our daughters!! Now after 14 years we know what the culprit is. We understand now what is wrong. Over the years we have been searching for answers and have gone through so many tests and doctors asking the same questions, "What happened to Cali and Ryann?" It's still surreal now a month later to actually have an answer. There isn’t a cure for mitochondrial disease but the good news is doc says, "there is treatment available!" The treatment is a vitamin cocktail that the girls take three times per day. The cocktail includes high doses of vitamins like COQ10, Vitamin B , Levocarnatine etc. etc. These vitamins feed their cells to help give them the energy they need to function properly. As scary as it to hear that your two little girls have a chronic illness it is amazing to now have treatment for them. I can't tell you how many supplements we have tried over the years just to see if they would help. Now we actually know that what we are giving them has proven to be life changing for others who have mitochondrial disease. Now the question is : do I dare to dream and hope that this new treatment miraculously starts to heal Cali and Ryann? Do I dare to dream that they will one day walk alone, run with their friends, play sports, and maybe, just maybe, get married and have a family of their own? My dreaming is endless but is it safe? I just don’t know if it is better to dream these wonderful dreams for our little girls or if I should stay grounded and unexpecting. Is it better to be pleasantly surprised with positive results? I am scared to dream to be honest. I am afraid that I am setting our family up for disappointment. What if this vitamin cocktail doesn't do much at all. What if we don't see any results? What if, what if, what if.... I don’t want to drive myself crazy but I cant help but think of all the possibilities.