I started Jalen's Book Drive as a way to celebrate Jalen, remember him and brighten the holidays for other special needs and critically ill children. Two of Jalen's favorite things were Christmas and Books! All children can be read to no matter what their ability or illness may be. For those of you who never had the chance to meet Jalen you can read his story below.
We are accepting donations to buy new books for kids of all ages and donating them as Christmas gifts. We currently work with St. Louis Children's Hospital, Mercy Children's Hospital, the Delta Gamma Center for Children with Visual Impairments, Children's Home Society and Maxim Healthcare to make sure every child has a new book to read or be read to.
Thank you so much for helping me remember Jalen, honoring him and giving back to other kiddos like him.
~ Susan Scott (Jalen's Mom)
www.facebook.com/jalensbookdrive
Jalen’s Story
My pregnancy with Jalen was picture perfect… no morning sickness, baby appeared to be healthy and doing well throughout and my 20 week ultrasound was fine. At 38 weeks the doctor thought Jalen might be getting too big and schedule an ultrasound to determine if we should induce the pregnancy because of his size. The ultrasound showed minimal amniotic fluid and low fetal heart tones. We were sent to St. John’s to have a c-section. At 8:06PM 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 and eventually were sent home because the insurance company decided there was nothing more they could do. Five hours after being home, Jalen went into cardiac arrest and was brought to St. Louis Children’s Hospital. Jalen suffered even more brain trauma from having gone into cardiac arrest and going without oxygen for some time. After numerous medical tests and genetic testing, there is no known cause for Jalen’s condition and we never received a diagnosis. Jalen puzzled his doctors and the medical community. They told us he wouldn't survive more than six months.... we were blessed with him for three and a half years.
I knew Jalen was special and that his life was going to inspire and teach so many. Everyone that met him instantly fell in love with him. Because of his fragile medical condition, he was homebound and received nursing care approximately 20 hours a day. He was extremely developmentally delayed and never walked or talked but he knew the people who loved him. He loved snuggling and being read stories and he especially loved it when his cousins and sisters visited him! I was passionate about keeping Jalen at home with us and as comfortable as possible. He liked being at home in a familiar environment surrounded by those that loved and cared for him. He was the love of my life and I'm so so grateful for every day I had with him.