Leah - Alabama
Here her mother reflects on those first months & years after her initial diagnoses:
There are some things that the human mind can not grasp.I had asked God over and over to heal her. I had fasted and prayed, until my husband, Darrell, thought I was going to wither away to nothing. I had cried. Heaping, sobbing tears. I even questioned. Why? Why would he allow this to happen? Why?
Over the next few months life was filled with doctors, diets, protein guidelines and more.
I worried if the list of things the "genetic team" had given her would ever end. I worried what I would do if she got sick. I wondered how I would handle all the stress that came with just normal childhood colds. I had worried about what my daughter would eat. I worried about if she would get picked on in school. I thought about how her brothers would view her. How I would view her. And... I worried about if she would live a full life. I wondered if she would get married and have a family. There were so many things that swarmed through my head for those first few months of her life. I would sit in bed and watch her sleep. I would almost always cry. Life was hard... I thought life was very hard. And I still had questions that I thought needed to be answered.
Days turned into months, and months into years. We were told Leah would never be able to tolerate more than 3 grams of protein a day. We were told she could develop blood clots, brain damage, that she wouldn't meet milestones "normal" kids reach. That the lenses of her eyes could dislocate and she could go blind. That she could develop heart disease and heart murmurs. That the valves in her heart wouldn't grow and pump they way should. Devastating.
Three grams of protein turned into 5. Five turned into 10. Ten turned in to 12, then 15, then 20.... It kept getting better and better.