Paul is 3 years old. We call him Sir Sweetness because of his loving, sweet personality and his amazing smile.
At his six month check up our pediatrician wanted him to go to Children’s Hospital in Denver to see if he needed a helmet, since he preferred to lay on his back. The nurse at Children’s Hospital told me she wasn’t concerned about a helmet but she wanted him admitted because she believed he having seizures. At that moment our lives changed. Paul was diagnosed with Infantile Spasms with an unknown cause. It took three months of daily ACTH shots for the seizures to stop.
By his first birthday we were told he was in remission. Our neurologist informed us that Paul had a rare seizure disorder. A gene was missing on chromosome 9 called STXBP1. The doctors at Children’s Hospital in Denver only knew of one other child with this deletion in 2010 and she lived in Japan. Through Facebook, I have found about a dozen other families with this deletion. Paul is one of the only children with STXBP1 who is not currently seizing.
I choose to have Paul start CBD Oil through the Realm of Caring because two EEGs this year have shown he could start seizing at any time. Currently Paul is unable to talk, sit, crawl, has poor head control and uses a feeding tubel. I am concerned he could regress even more if the seizures start again.
My wish for Paul is that by using the CBD Oil, Charolette’s Web, made by The Realm of Caring and The Stanley brothers, his quality of life will improve. We started this new chapter in our lives the day this picture was taken. For the first time since he was diagnosed with STXBP1 I am filled with hope. We take everything one dose, and one day at a time. Each skill learned is called an inch-stone instead of a milestone. I am praying for lots of inch-stones in our future.