Lacie Wivell

On April 8, 2004, we were blessed to welcome our daughter, Lacie Ann, into our family. Lacie was everything we expected. She looked exactly like her brother, Colby. Lacie developed as a typical newborn would. At four months, she was rolling over from stomach to back and back to stomach. At five months, she started sitting on her own with some assistance. Each month’s check up she seemed to be progressing as normal. Around her six month birthday, we noticed Lacie was not focusing her eyes as she should have been. I brought my concerns to the pediatrician at her six month check up. At that time, the doctor did not see much to be concerned about, but because lazy eyes are in the family decided it would be best to see a pediatric ophthalmologist.

We were scheduled to see the ophthalmologist two weeks later. On November 11, our lives were forever changed. After dilating Lacie’s pupils we were given the worse news a parent can hear. We were told Lacie had some type of lysosomal storage disease. My first thought was how do we fix it. We were told she had Tay Sachs Disease, Sandhoff, or Niemann Pick and all three were fatal in early childhood. After another visit to the pediatrician and some blood work, it was confirmed Lacie had Tay Sachs Disease on November 22, 2004. She was 7 months old.

One of the first contacts I made was to Kim at NTSAD. It was the email I did not want to send, but I knew I had to. To look back at that time right now, it was the best thing I ever did. Kim was so warm and considerate. She put us in contact with a few families that helped us in so many ways. We knew we were not in this alone. We attended our first conference in New Orleans, LA in April 2005, one week after Lacie turned 1. She was the baby of the children that year. I was so overwhelmed by everything going on. There were children there that were newly diagnosed and children that were in the much later stages of the allied diseases. I just absorbed so much that weekend, but I felt so comfortable to be there and all the families made us feel that there were there to support us in any decisions or questions we had.

Shortly after returning from the NTSAD conference, we started to see changes in Lacie. She was regressing. She could no longer hold her head up, no longer grip, and the smiles were becoming more and more sporadic. In July, Lacie was diagnosed was aspiration pneumonia. We decided it was time to have a feeding tube put in place. She went into surgery at the beginning of September; she came through the surgery like the champion she was. At the end of September, Lacie started having such hard labored breathing; she again was diagnosed with pneumonia. She was hospitalized for the weekend and seemed to improve during the hospital stay. At the end of the weekend, I told the doctors I wanted to take Lacie home with us and make her comfortable and let her be in her own surroundings. There was something in my gut that told me Lacie was not going to recover from this pneumonia. My gut instinct was correct and on October 23, 2005 Lacie’s short but courageous battle with Tay Sachs ended in the arms of me and her Daddy.

We miss Lacie each and every day. There is not a minute goes by that we do not think about her and what she would be today. Each year in October we do a memorial walk for her to keep her Legacy alive, raise community awareness about the allied diseases, and to raise funds to help find a cure.

Please feel free to contact us at lisawivell@yahoo.com if you have any questions. You can also learn more about Lacie about www.geocities.com/ourprincesslacie/.