Friday, February 13, 2009

Did you sign yet?

The Petition to Cure SMA is almost at the original goal of 50,000 signatures.... If you haven't signed yet, please do, and then pass it on to everyone you know. There are millions of people in this country; surely none of them would want a young baby to die from a disease we may be able to cure if we just fund the research!

If you are new to my blog, here is some information 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.

1 comment:

Helen Baldwin said...

I have just checked the Google Alert for SMA from Friday. I usually set the alerts aside for when I have time, but I decided to read it today and found your blog.

I am so sorry about Elias. He joins many other beautiful angels, including ours.

I would love to add Elias' name to the memorial section of a book I wrote about Jeffrey and to add your family's blog to the SMA Families link in a new blog I'm doing with a fellow SMA mom.

Many hugs and prayers from NC -
Helen
jeffreyb@skybest.com