So this is my first post on my Giving Back Series! I met Danielle & Justin through a wonderful Mutual friend Ali back in Fall 2010. I did their Maternity session in Old Roseville and knew right away they were madly in Love with each other. After going through so much after Taylor’s birth I still see their Love for each other and for Life. Unbelievable! I thank God so much for bringing them into my life and I pray that their story would touch your heart it did mine. Taylor is such a sweet little girl and so full of life! Here is Taylors story in Danielle’s words;
Four months ago Taylor was diagnosed with a mitochondrial disease call Pearson’s Syndrome. This mitochondrial DNA deletion is typically an acquired syndrome but can sometimes be genetic. It can attack all the organ’s in a child’s body and potently be fatal. For now Taylor only suffers from an extremely rare anemia called Sideroblastic Anemia, a bone marrow failure, in which her bone marrow doesn’t allow for her body to make red blood cells, partially because the Iron in her body doesn’t allow it to. Due to this Taylor has to have blood transfusions every 3-4 weeks. Three weeks ago Taylor had a port put in, which is a special tube allowing direct access to her veins for her transfusions so that they don’t have to put and IV in her every time. Looking at this precious little angle you would never imagine something to be wrong with her! She is growing and developing right on schedule but not being able to know the future is the hardest part of it all. There are only about 100+ cases world wide of known diagnosed Pearson Kids. Some of which we’re gotten into contact with their parents. The first thing each one of them has told me is “I wish I could tell you what to expect, but not one case is the same. We can only take it one day at a time.” You never really understand how strong families with an ill child can be or are until you actually have to be the one to be strong. The other Pearson kids have so many things wrong with them I couldn’t even begin a list, they’re all so strong and beautiful I just want nothing more than to hug them and tell them how strong they are. I would have never imagined having to go through what Justin and I have been through in the last twelve months. From having a perfect pregnancy, a easy labor, my baby taken from me the moment she was born not being able to hold her for two weeks, taking her home for the first time, blood work every week, transfusions every 3-4 week, bone marrow biopsies, doctor after doctor, appointment after appointment; I wouldn’t change it for anything. We have the rest of our lives to support, love, and struggle through this with Taylor taking each day, one at a time, and loving her more and more every second of everyday. Taylor is the best thing that has ever happened to Justin and I, she reminds us each day why we’re here, and teaches us each day to be strong and to give thanks for what we have.
For more information on Mitochondrial Disease: http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm
