Reece's Story
Hello, we are the Bliven family. We are a family of three: myself, my husband and our one son Reece who is 7. I had a normal pregnancy with no complications. Reece was born at 39 weeks 2 days at 7 pounds 10 ounces. The first year was extremely rough with Reece. We struggled trying to find a formula that he would tolerate and he was sick often. Many of his first vaccines took administering them 3 times before he developed immunity.
At around 18 months we noticed Reece was struggling with speech. We had him evaluated and he showed speech delay as well as fine and gross motor delay. This seemed to become more and more apparent over the next few years showing overall developmental delay. He started receiving services through our school district at age 2 which consisted of speech, OT and PT (which he still receives today).
At the age of three on a family vacation Reece had his first seizure. The whole event was around 10 min. It was terrifying as he stopped breathing and we had never experienced a seizure before. Reece was seen within a week and had a diagnosis of epilepsy. It wasn't until almost a year later that we would receive the diagnosis of ADSLD after an Invitae epilepsy panel.
Over the last 4 years we have noticed Reece’s seizures have become more severe. He more often has tonic clonic seizures. Most of these seizures occur around the time he is falling asleep, but not all. The use of rescue medication has increased as well. Developmentally Reece has stayed around the 4-5 year old range. He is still making some strides in school but they are on a much smaller scale. His coordination has worsened. He is falling a lot more which is affecting his safety. His fine and gross motor skills still are an issue. Reece needs help with most tasks. Reece is verbal but struggles with behavior issues, emotional regulation, and peer interaction. His autism traits are more prominent as he has gotten older which also makes life slightly more challenging. He struggles with sleep and needs sleep aids to ensure he has a good night sleep as lack of sleep tends to be a trigger for his seizures.
Day to day life for our family can be tricky. Reece requires around the clock care and can not be left alone. The types of seizures Reece has and the fact that he stops breathing puts him at an increased risk for SUDEP. For this reason myself or my husband has to sleep with Reece every night to ensure we catch a seizure, time it, and keep him safe. Making sure he returns to a normal respiratory rate. Reece needs help toileting, dressing, bathing, and really all daily hygiene routines. The life we had planned for our child was drastically changed that day in September. We as parents have had to deal with grieving the loss not of not our child but of what we thought life would be with and for our child. This has been a rollercoaster of emotions. Lots of sadness and anger. However this has also taught us unconditional love, patience, and making every second count. Not knowing for how long Reece will be verbal, mobile, or with us puts into perspective just how fragile life truly is. I am grateful to him for showing me to be happy and grateful for the small victories and to celebrate everything.