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Hands
Wayland and Piper's Story
Hands...

There is no other experience in the world as wonderful as that moment when a doctor first places your child in your hands.  Your hands cradle, sooth, hug, pray for and caress every inch of your child.  The hands of a parent are intended to protect a child.


These are the feelings we had when our son Wayland was born March 9, 2003 and our daughter Piper was born April 15, 2005.  In spite of the these feelings, our hands could not protect our children when they were both diagnosed with Spinal Muscular Atrophy,

Type 1.  More

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.

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