This is the case for Jennifer Hawn.  When she gave birth to a sweet little boy on January 27 of this year, she was over the moon to have a healthy son, Ryan.  But her joy was short lived.  In only 2 months, Ryan had trouble eating, his muscle tone deteriorated, and his breathing became rapid.  Jenn knew there was something wrong.

The day he turned 4 months old was the day the doctors put a name to Ryan’s disease.  He had Spinal Muscular Atrophy.  There is no cure for SMA and very little in the way of treatment.  SMA has the nauseating distinction of being the number one genetic killer of young children. Jenn and her husband Chris were told there was nothing that could be done to save their son.

So, Ryan is at home. Every day, Jenn stares into he son’s eyes, she talks to him, she tells him she loves him, but she can’t help but hurt, knowing she will be robbed of so many moments.

This incredibly strong woman, along with her equally brave husband, are preparing as best they can.  Jenn shares her family’s journey online and hopes that one day, a cure for SMA will keep another family from experiencing her pain.

The true sign of someone extraordinary: the ability to feel for others while experiencing the worst pain of your life.  If enough people sign the petition on Jenn’s site, there may soon be additional funds used to research, and one day, cure this terrible disease.

All it takes is a signature.

The family pictures you see in this post were taken by Darcie Deneal of The Jeremy Project - a not-for-profit photographing children with special needs and circumstances.

About the Author: Danielle Smith is a mommy to two smart and sassy small people, as well as the founder and primary author of ExtraordinaryMommy.com. You can catch her hosting a brand new live show, The Spin Cycle, on MomTV.com every Wednesday at 9pmEST. She also hosts a show on Blog Talk Radio and contributes to WhyMomsMatter. Danielle is thrilled to be contributing to MomItForward as ‘giving back’ has always been an important part of who she is and what she hopes to teach her children.