This is my cousin Tara’s baby Brynlee. Isn’t she a beautiful little thing? Brynlee has SMA (Spinal Muscular Atrophy) and I asked Tara if I could post about her on my blog and let you know about her. If you get time you really should read Tara’s blog from the beginning to learn more about what SMA is, and about their sweet family.
I got these facts off of Tara’s blog.
What Is Spinal Muscular Atrophy?
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, based on certain key motor function milestones.
Quick Facts About SMA
Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
WHO IS AFFECTED. SMA is one of the most prevalent genetic disorders.
One in every 6,000 babies is born with SMA.
SMA can strike anyone of any age, race or gender.
One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
7.5 million Americans are carriers.
THE TYPES OF SMA. SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.
Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support.
Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.
Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.
Type IV is the adult form of the disease. Symptoms tend to begin after age 35.
SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable
You can followBrynlee’s battle with SMA on her blog.