Michael Joseph Bentley "MJ" was born March 29, 2011 to proud parents Nanci and Michael Bentley. MJ was born 2 weeks early by c-section and was 8lbs 10oz. MJ did not have many complications.
Within 5 days we were sent home to begin our journey as a family. We did not know at 5 months old MJ would be diagnosed with PKS.
We had several indicators that led us to have genetics testing done. MJ had a cataract in one eye and seemed to have low muscle tone. Surgery was done at 4 months old to remove the cataract and then he began wearing a contact in the eye. MJ still wears his contact ( when he doesn't rub it out). Once MJ was diagnosed we were able to connect with other families and Specialists to put us in the direction we needed to go. Early Intervention began.we had so much support from amazing family and friends who never treated us different. They all just joined in and helped where needed. Since that time we continue to build our knowledge to ensure MJ receives everything he needs to maximize his development with still letting him be a child! Never leave any stone unturned and advocate for what you believe! That is what keeps us moving forward. We also have an outstanding team of doctors and therapists who we call the "Dream Team".This has been a journey neither of us ever thought we would experience however it is the best thing that has ever happened to us. We are fortunate to have been chosen by MJ to be his parents. He has taught us so many things that we only wish others get to experience. He has made us stronger, patient, compassionate, determined, appreciative, courageous, and most of all humble. He has a smile that takes your breath away and love that makes you melt. We look at the little things as big things.....MJ loves music, lights, snuggling, ceiling fans,blankets, pillows, swinging, outdoors, swimming, sledding, peanut butter and jelly, green beans, peek a boo, and so much more. MJ will be turning 3 this year and is using a walker and working to sit up independently. He is also learning some signing with the assistive tech in place as well. He does receive vision, OT and aqua therapy services as well. MJ also attends a day program 3 days a week which he loves.
We are thankful for the PKS family, our families, friends, and everyone that has supported us along our amazing journey that it has been so far.......
MJ is a "shining star"!