Nicole and Jake

“He has taught us and so many around him the true meaning of pure, unconditional love.”

Our first born son Jake, who is 19 years old, was born with a very rare syndrome called Pallister-Killian Syndrome.  He was diagnosed when he was 6 months old and we were told there were only 50 known cases in the entire world.  We now know that there are fewer than 500 diagnosed cases, but doctors believe there are many more that just go undiagnosed due to the method of testing for this syndrome. 

Jake is non-verbal and non-ambulatory.  He is legally blind and hearing impaired.  Medically, he has had 17 surgeries for various issues and he has seizures, GERD and sleep apnea. Jake is 100% dependent on caregivers for all of his daily living skills.  Despite everything he has been through, Jake is one happy young man! He is extremely easy going and has a smile that lights up a room!  We see the affect he has on people and it’s incredible.  His infectious laugh will make everyone stop and laugh with him. He has taught us and so many around him the true meaning of pure, unconditional love. 

Jake has a younger brother and sister who are twins that absolutely adore him. He loves being around us and his siblings, but also an entire network of family, friends, teachers and therapists as well. He just loves to be loved!

Up until a year ago,  we puréed all his food and he ate everything by mouth.  He was always on aspiration precautions, but he was never really sick with aspiration pneumonia so we just kept on feeding him. In November of 2021 he had spine surgery to fix severe scoliosis.  Two weeks after the surgery, his left lung collapsed and he spent 14 nights in the ICU. We quickly realized that fixing his spine caused him to aspirate on everything he was eating and drinking so we were faced with feeding tube decision.  

Initially we were devastated because we felt we would be taking away something he truly enjoyed.  We quickly realized this was the best decision we ever made for him and looking back, we wished we had considered it sooner. Before his spine surgery,  the tube would have been so helpful for giving medications or for days after a seizure when he would sleep all day. During those times, we would have been able to use the tube and still feed him by mouth.  Now he’s had nothing by mouth for over a year and he doesn’t miss eating at all.  I think he just feels better overall!! He has been happier and healthier ever since the tube was placed!

Before we found the FreeArm Muscle, we were dragging an iv pole around behind him which is not an easy task with 2 hands!!  I am so happy we found this!  Now he can be in any chair and wheeled around easily while he’s eating.  It has been life changing for us!  We are so thankful for the FreeArm Muscle!!