Nicoletta's Story
Written with Love by Mommy


Our 5-month-old daughter, Nicoletta was diagnosed with the most severe form of Spinal Muscular Atrophy (Type 1) on Oct. 6,2005. We had never heard of SMA and wondered how our daughter could have been diagnosed with such a life-changing disease.

The days went by and Nicoletta was hospitalized to have a feeding tube inserted in her nose because she was unable to swallow anymore. We hoped our little girl would one day get better, but we were told by several doctors that the life span for children with SMA Type 1 was under 2 years of age.

We were in complete shock because we knew each day we spent with our daughter might be her last. My parents took Nicoletta and the rest of my family to Walt Disney World in Orlando in Octoober. She had so much fun and we took a lot of pictures. With Thanksgiving approaching, we decided to have a nice turkey meal at home with our other three children.

Around 9 a.m. on Thanksgiving Day I was about to sit down with Nicoletta on the living room sofa to watch the Macy's day Parade when I noticed Nicoletta turning blue. I rushed her into her bedroom to check her oxygen level and it measured only 55/88. I woke my husband and he helped me get her oxygen tube into her nose so she would return to her normal color.

We had several nurses come to our house to check on Nicoletta and they said she would have to stay on oxygen until further notice. They also had a nurse stay at our house for the next few days until Nicoletta's condition improved. We went to Sears on Saturday and got family portraits taken and had her baptized at our house with all our family members present. We spent many hours with Nicoletta and took many pictures.

It was now Sunday and we stayed home all day to be with our precious daughter. Nighttime came and we all told Nicoletta that we loved her and gave her lots of hugs and kisses. My husband and other children went to bed. I stayed in Nicoletta's bedroom and sang a song to her and let her know that mommy loved her so much, and I gave her lots more hugs and kisses before telling her goodnight. Little did I know that would be the last time I would tell her that I loved her. Sadly, just after midnight at 12:55 a.m. Monday-my father's birthday-the nurse came to our bedroom, woke my husband and me, and told us that Nicoletta had passed away. That was the most painful news we could have ever imagined in our lives.

We will always miss her and shed occassional tears for her. Our little angel now lives on in spirit and forever in our hearts.

This is the end of my story for our little angel that watches over us everyday. I really hope everyone gets a chance to read this story and enjoys it. I just want to tell everyone thank you for letting me and my family be a part of the SMA family and being there to talk to when I need someone to talk to. Thanks. Lisa Genna. I have enclosed the picture that I used with the story. She was 3 months old and didn't start showing signs of SMA until 3 1/2 months. We miss her dearly and pray for all the other families that have been through this hard time as well.