Jalen Amari Julian Scott

December 3, 2007 – October 17, 2011

My pregnancy with Jalen was picture perfect and my 20 week ultrasound was fine. At 38 weeks the doctor thought Jalen might be getting too big and scheduled an ultrasound. The ultrasound showed minimal amniotic fluid and low fetal heart tones. We were sent to the hospital to have a cesarean section and at 8:06 PM on December 3, 2007 Jalen was born. We knew something was wrong immediately after he was born because he didn′t cry and he wasn′t breathing correctly. He was rushed to the NICU for further testing. An MRI showed that Jalen′s brain was lacking white matter and his brain stem was significantly smaller than it should be. We spent two months at St. John′s Hospital and then our insurance company decided there was nothing more the hospital could do and sent us home. Five hours after being home, Jalen went into cardiac arrest, we called 911 and he was brought to St. Louis Children′s Hospital. After numerous medical tests and genetic testing there is no known cause for Jalen′s condition and he never received a diagnosis. The doctors predicted his life expectancy to be 3 months but Jalen proved everyone wrong and lived until he was almost 4 years old. Jalen had a tracheotomy and was dependent upon a ventilator to breath and a g-tube to eat. He did not walk or talk but he knew the people who loved him. We did everything we could to help Jalen and improve his quality of life and he saw many therapists and specialists. Physical therapists worked with him to help him hold his head up and improve his strength. They also helped us determine what equipment we needed to meet his physical needs like his wheel chair and ramps, a hospital bed, a stander to help him stand and a lift system to bathe him. Occupation therapists helped him work on motor skills and speech therapists worked with him on basic swallowing skills. Jalen also had several home health nurses that helped us care for him through the night.

Despite Jalen’s significant cognitive delays and medical challenges he was able to enjoy some amazing things with his family. We bought a full size van and the Variety Club made it handicap accessible for him so we could transport him wherever we wanted to go. We took him to the park, to the zoo, to a movie, to a Cardinals game and on lots of walks. He also went with us on a beach vacation to Destin and to Disney World through the Make a Wish foundation. We spent a week at Give Kids the World, a special resort for Wish kids. Jalen was treated like a king and got to do some incredible things… he got VIP access to Mickey Mouse, he pet a dolphin, went on lots of rides including Finding Nemo and It’s a Small World and he even rode a horse! I think Jalen would agree, it was the best trip ever and certainly one we will never forget. A short three weeks after that trip, our miracle baby boy peacefully passed away on October 17, 2011. I miss him every second of every day and I’ve found some peace in believing I will see him again someday.