Extreme Home Makeover will feature a family on October 5 whose children have the disease Spinal Muscular Atrophy. SMA is the leading inherited killer of infants -- yet is almost completely unheard of. In fact 1 in every 40 people carries the gene responsible for this disease. We are a Santa Barbara family coping with this cruel disease and fighting for our daughter.

Our daughter, Gwendolyn turns a year old on October 4th. At 6-months-old, she was diagnosed with the terminal illness Spinal Muscular Atrophy Type 1 or SMA1, the leading genetic killer of infants. SMA is a degenerative motor neuron disease, much like ALS. Her mind is perfect, but her body is failing her. There is currently no treatment and no cure, but doctor's believe both are within a few years if they receive adequate attention and funding.

My pregnancy with Gwendolyn was fantastic, no problems. She passed all newborn screenings with flying colors. At all early appointments she looked great. Then, at 9-weeks-old, during a routine visit, her pediatrician, Dr. David Abbott, noticed some serious problems with her muscle movement. That morning she was smiling and mimicking me, by that night she was completely paralyzed and was having trouble breathing. After a 3-week stay at Cottage Hospital and with fluids and time, Gwendolyn grew stronger, but we eventually learned the worst: our baby was going to die before the age of two and there was nothing we could do. But how could we do nothing?

When we learned of legislation in Congress that would help fund research, we contacted the national organizations behind it (FightSMA.org, FSMA.org, and MDA.com) to see what we could do. They told us they needed more awareness, so we began a petition (PetitionToCureSMA.com) to show Congress that although few know of this disease, many want to see an end to it. We have over 20,000 signatures now and each one gives us strength to keep fighting for our daughter and for the thousands of other children who no longer have a voice. We also started a blog to chronicle Gwendolyn's life and raise awareness: GwendolynStrong.com. The local parent group, PEP, has rallied behind our desire to raise awareness and parents have stood on State Street for us to gather signatures and pass out flyers.

SMA is a cruel and devastating disease. It impacts every part of our life. But, I have found that in all of this despair, the goodness of others shines through so brightly. And Gwendolyn teaches us all.

Here is a link to a short video we created to raise awareness: http://www.youtube.com/watch?v=U_pL0kMvlcg