My name is Deana. Travis and I are the proud parents of Jakob. He is my youngest son; I have an older son named Trey. Jakob is a pistol fireball. He loves Elvis, Michael Jackson and all types of music. He was born at 29 weeks and ended up with Cerebral Palsy, Seizures, Cortical Vision Impairment and Periventricular Leukomalacia. Despite all this he is full of life and loves everyone. He is into venturing and loves being a chair assisted runner having competed in a marathon, half marathons along with 10ks and 5ks. He likes bowling, fishing and just hanging out at home.
My older son Trey is Jakob’s caregiver, so they have a special bond. My husband Travis and I try to give Jake a “normal” life as possible. When he was younger and smaller, we would carry him around in a backpack carrier so he could venture more places. As he has gotten
older, we have to use his wheelchair. As you know most places are not accessible, so we have to limit our exploring. If it is possible to do it with him, we give it a try. He is definitely our world, and we love it.
As Jakob has gotten older of course he has gotten longer and stiffer. We are asking for the chill-out chair to give him an alternate, comfortable place for him to “chill”. He currently has an “activity chair” that we use for feeding, etc. but it isn’t comfortable or relaxing. He is unable to sit up straight so just putting him on the couch is out. We do put him in a recliner, but he ends up sliding over and we have to constantly pull him up. The chill-out chair is designed to provide the ability to sit straighter but with comfort. It can be used for a lot of things. We would like the wheels on it so we can move him around in it and the tray so that he can play or even be fed in the chair. We have tried several times over the years to raise money for it but have been unsuccessful. I have attached both the website link and the link for the items we would need. It is a lot of money, so if it isn’t possible, we totally understand.
As I had mentioned he has no trunk control and is constantly leaning to his right. In his wheelchair, activity chair, recliner and my husband’s truck we are continually trying to keep him upright. We have stuffed pillows, funoodles, towels, blankets, everything and anything to help him stay up right. He even had a back brace before he had a baclofen pump put in and it didn’t help. We currently have a neck brace that helps somewhat. We started him back on therapy because his legs were getting stiff, and the new therapist told us about the Versa form pillow. She said it would work for help provide a formed shape for him to sit in. It can be shaped and reshaped depending on which chair he is sitting in. We thought this would be great for his daddy’s truck too.
Gift: Chill-Out roller chair
Given: April 2021
Location: Gordon County