While it may appear to be poor timing for me to be WAY behind in posting for the UBC – it’s interesting that the suggestion for UBC post#4 is to discuss a charity worth noting…and I only discovered THIS one yesterday!
From the Families of SMA.org site: “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.”
Little Avery was diagnosed with SMA and her father has taken on the courageous and daunting task (don’t know if I could do it, to be honest) of regularly blogging about Avery and her battle at this blog: Avery’s Bucket List. One look at this beautiful baby, and you can’t help but want to help in some way:
According to Avery’s Dad, who has chosen to write the blog from Avery’s perspective (very effectively, in my opinion), little Avery has a “bucket list” of things she would like to accomplish in the time she has been given to live (although I’m sure we all hope it will be much longer than the 18 months her doctors have stated she can expect!)
She has crossed a few things off her list – what’s up next?
Avery says, “Whatever I bring to life, because I don’t have time to wait for life to bring anything to me.”
Please visit Avery’s Bucket List to learn how you can help this precious little girl, her family, and others diagnosed with SMA and their families.