Logan
Logan was diagnosed with Spinal Muscular Atrophy (SMA), a disease that doesn't affect a child's brain, but leaves them unable to use their muscles. Two-year-old Logan can move his wrist and ankles, and wave if you lift his hand. He loves the bathtub because he can move his arms and legs better in the water.
Until a cure is found, SMA is considered terminal. His mom Shelle and dad Chris make the most of every day with Logan, setting goals, celebrating his milestones, and creating memories. Shelle says that while Logan is here, they are going to make the most of it.
What is it like having a child with Spinal Muscular Atrophy?
It's hard seeing him go through it. But he's happy. Kids with SMA are smart, actually smarter than other kids sometimes, because that's where they put all of their energy.
Can Logan talk?
He says "Dada" … he said that the day before his first birthday. He can't say "mama," but says "nana." It can be hard for him to talk. He has his own way of communicating. I've taught him to open and close his hands if he wants to be picked up. But kids with SMA often have eyes that are amazing. Their eyes tell a whole story because that's how they talk. I can tell what he wants through his eyes.
What are some more challenges of SMA?
He doesn't sleep well at night because there's no good position, so we have to move him around, always turning him throughout the night. He uses a ventilator and also has g-tube because he can't swallow food. He has a "cough machine" too because he can't cough on his own.
When did you find out he had SMA?
At two months I noticed he wouldn't hold his head up. By four months he was losing weight, not eating and couldn't breathe. At first they told me he just had allergies. I took him to the doctor each week for a month. At one point his oxygen was very low. They took us right in and we were at Phoenix Children's for almost one month. His tests came back positive for SMA when he was six months old.
What was it like for you emotionally when you found out?
We knew we could take care of him, and we think that's why we have him instead of someone else. That's why I'm so glad we have him. He was sent here for a purpose that we don't know yet. He's the greatest little guy. I'm so glad he picked us for parents.
