Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.
It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal, and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.
Spinal Muscular Atrophy is a genetic disease. It's something you're born with, it's not something you catch.
Certain people carry the potential for the disease - these are called carriers. Carriers do not have the disease themselves but are the building blocks to create a child with SMA. If two carriers,
What exactly is a mucus plug?Mucus plugs are the single scariest thing to a parent or a caregiver of a child with SMA.
It is a condensed ball of very thick secretions that blocks your child’s airway. To put it in simple terms, it closely resembles a hairclog occluding or blocking your sink drain. There is enough room for some of the water to pass but not enough to keep the sink clear. The plug itself may not be reachable by a suction catheter. Plugs can occur in the bronchial tree deep into the chest. This is why the Cough Assist is so vital to restoring their airway.
How do we survive sick season?
No, people probably aren’t going to like it and, yes, they are probably going to fight you the whole way
The CDC says that cold and flu season PEAKS in November and goes through April. However, for SMA families the preparation begins long before that. We can’t wait until there is a sickness already upon us because by that time it may be too late. So we prepare. We prepare to become anti-social hermits, all to save the lives of the children we love so dearly. Whereas you can control who will socially enter our home, such as friends and family members, what do you do about those that are directly involved in the care of your child, i.e. therapists and nurses? There is a process that will help insure that your child will be exposed to as little potential for infection as possible.