This is the story of one adorable baby girl whose life was cut short much too soon as told by her mother, Hillary. SMA awareness month is about giving a voice to those babies who did not live long enough to use their own...We were blessed with twin girls, Avery and Zane, in January 2009. We were overjoyed! They both were healthy. We enjoyed every second with our baby girls. At one month of age, we noticed Zane was not moving her head and limbs as much as Avery. On February 13, we took the girls to a routine pediatrician visit. At this time, we brought to the attention of her pediatrician that we were concerned that she was not moving as much as Avery. The movement in her arms and legs had decreased as Avery’s had increased. Her doctor took a closer look and suggested we immediately take her to A.I. Dupont Children’s Hospital in Wilmington, Delaware.
After spending 10 hours in the emergency room, Zane was admitted to the hospital where she spent the next five days. After experiencing a battery of tests and being seen by countless doctors, the medical team at Dupont had come to us with the most devastating diagnosis. On February 19, we were told that Zane had Spinal Muscular Atrophy, Type I. Our world came crashing down in seconds! How could this be? Why do children get sick? How can they get terminal diseases? We were devastated, angry, in shock, in denial…. and the list goes on.
As she grew older, the disease progressed. Her muscles became weaker, she had low muscle tone throughout her body, and she lost the ability to swallow. She had to be fed through a G- tube that was surgically placed into her stomach. Our home had become a hub for the multiple life saving machines Zane would need. There were countless organized boxes of medical equipment in her room. Her daily routine consisted of Early Intervention therapies, doctor’s appointments, frequent suctioning & nebulizer treatments, and play times with her twin sister, Avery. She was happy and smiled often.
On May 19, 2009, our world was forever changed. Our family was enjoying a peaceful evening at home when I noticed Zane looked pale. Through education, I have learned that when a child with SMA looks pale, his/ her oxygen levels are low. I quickly attached the pulse- oximeter machine to Zane’s toe, and the reading was a staggering 70%. (100% is normal) I thought “This can’t be right!” I took a second reading and again 70% was displayed on the screen. This meant that Zane was sick and she was not receiving enough oxygen. Keith and I frantically loaded Zane into her adaptive car seat and drove the 45 minutes to the Emergency Room at DuPont Hospital. Within minutes, Zane had a team of doctors and nurses working on her. It was one of the most frightening moments of our lives. About 1 hour later, Zane was admitted into The Pediatric Intensive Care Unit where she “lived” for 27 days.
Zane had contracted a type of flu, para-influenza. Between Keith, myself, and our network of supportive family and friends, Zane was never alone. Due to the SMA, Zane had to fight very hard to rid the illness. There were many days of 2 steps forward and 3 steps backwards. With machines attached to her and procedures being done every four hours, she always smiled and rarely cried. Finally, she began to improve. She looked better, was detached from the machines and the infection had been cleared. We went home on June 15. We were so happy to have her home!
Within 12 hours, Zane’s oxygen levels had dropped significantly again. She was pale and breathing rapidly. We called 911 and again Zane was transported to DuPont Hospital into the ICU. This time was different. The smiles were gone, she didn’t open her eyes as much, and the staff’s attitudes were solemn. She was suffering; we all secretly knew it. Watching her fight for every breath was heart wrenching. There were times I couldn’t take it and cried uncontrollably. Several days of aggressive medical treatments, Zane’s condition was not improving but getting worse. After the second day of being there, the doctors approached my husband and I about making some decisions. Zane was dying. She was suffering. It was not a way for a person, for a child to live. We could see and feel it. Seeing your child in that situation is unbearable. Unfortunately, this is the nature of SMA. On June 18, 2009, Zane passed away peacefully in our arms at 3:37 p.m. She was 5 months, 16 days, 1 hour, and 3 minutes old.
TOO YOUNG!
Since Zane’s passing, we are determined to bring awareness to this horrific disease. We, along with our supportive community, will organize fundraisers in Zane’s memory and inform the public about SMA. We don’t want any other families and children to experience our pain. We miss Zane so much but take solace in the fact that she is in Heaven, SMA free. She is no longer suffering. We are saddened by the fact that Avery will not remember her sister. We talk to Avery everyday about Zane. She had an enormous impact on many people. She brought so much awareness to this disease.
Zane, we will fight for you and the other families afflicted with SMA.
We love you so much honey.
Sincerely,Keith, Hillary, and Avery Schmid
Thank you so much for allowing us to share Zane's story! She was a beautiful baby who truly touched our hearts. She will always be remembered.
The Schmids have a blog to help raise awareness for SMA, please check it out: http://www.sweetbabyzane.com/ 
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