neurodegenerative disease (encephalomyelopathy), scoliosis, global developmental delay (mild-mod.), leg length discrepancy w/low muscle tone, low muscle tone in right hand
Total sweet heart alert! The agency’s team got to see Mara for the second time when they visited in May! With total politeness she asked for a pack of gummy snacks. A girl that knows what she wants. Soon she was showing off her talent to color! Wow does this girl have skill. Colors all out and organized, color page tilted ever so slightly, and bent into the coloring pose she started her master piece. As we watched she made the most deep-in-thought faces as she decided exactly how she wanted the final product to be.
Mara is such a gentle soul. She has an adorable smirk and wise, knowing eyes. She loves drawing, puzzles and going to school. And she was very, very pleased with her new haircut– she “likes it short because it’s easier to fix and much cooler”. She is so incredibly persistent, such as hard worker. Her foster mom said “She is always like this. She comes home from school and does her work, I never have to remind her. She doesn’t even stop to eat her snack until she has completed all her work.” What an amazing kid!
Mara has a neurodegenerative disease — that is an umbrella term for the progress loss of function of her nervous system. She also has scoliosis. She gets occupational and physical therapy weekly and her foster mom says it has really helped her posture and endurance. Mara walks, goes up and down stairs and can even jump. She has weakness in her arms and legs, but she really impressively compensates when doing daily activities. She is independent with dressing, bathing, and eating.
Unfortunately, we don’t know specifics about Mara’s disease or how fast it will progress. She was seen by a neurologist in 2010, but they were not able to reach an official diagnosis. They refer to it as “encephelomylopathy” in her official paperwork, which is, again, an umbrella term for any disease that affects the brain and spinal cord. Sweet Mara is such a joy. She deserves a family who will be detectives and help determine what is causing her weakness. She deserves a family that will challenge her with puzzles, math problems and lots of therapy. She deserves a family that will be there, whether the disease progresses rapidly or very slowly. She deserves love. She deserves her family. Mara is a go getter. She is sweet. She is looking for her forever family. Could that be you? Additional information and photos are available in this blog post 1 and blog post 2.