One in every 6,000 babies is born with spinal muscular atrophy, or SMA. It is the number one genetic killer of children under the age of 2, but can affect people of any age and gender. The disease destroys the nerves that control voluntary muscle movement. This severely limits people's abilities to walk, swallow, crawl and hold their head up. Follow these steps to care of someone with SMA.
Instructions
1. Use resources available through the Families with SMA website to help you better understand the disease. You can't begin to care for your child if you haven't come to grips with the effects of SMA.
2. Follow your child's lead. SMA is a physical handicap. It doesn't necessarily affect a child emotionally or cognitively. Allow his happiness to catch on.
3. Appreciate the good moments. It may be a minor victory or maybe your child is enjoying herself at the computer in the middle of the night. Whatever it is, value and appreciate her success at living life to the best of her ability.
4. Be hopeful and allow your child to see that hope. There's nothing worse than seeing your child in pain or in a hospital bed. But you need to keep the hope alive and let him see you smile through your fear.
5. Enjoy your child's accomplishments like you would any sort of accomplishment. She may not be able to walk, but she may be the funniest kid you know. Revel in that.
6. Talk to other SMA parents. You need to become an expert on medical complications, equipment and treatment options. Use other parents as the valuable resource they are.
7. Take some time for yourself. The last thing SMA parents think about is themselves. But it's vital that you do things you enjoy. Even if it's a two-hour date night, get out. If you take care of yourself, you can better care for your child.
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