Nora's first camping experience - goodentree.com

We took Nora backyard camping this weekend. We pitched the tent behind the house and started a fire in a fire pit. It was the first time Nora saw fire and she was almost hypnotized by it. As you can see, Nora is different from most children. She has a terminal disease. Nora is dying from SMA (Spinal Muscular Atrophy). SMA is the #1 genetic killer of infants and 90% of Type-1 SMA kids don't live to see their 2nd birthday, some never make it to their first. SMA is a horrible disease that weakens all the voluntary muscles of the body. Cough, sitting, standing, swallowing, hands, fingers, toes - everything skeletal is affected. Nora has almost no movement left. Her brain is not affected though she she's like any normal 3-year-old but trapped in a failing body. She is growing weaker and weaker as the disease progresses. There is no treatment for SMA and there is no cure. We just make the most of the time we have left with Nora.