In the Blink of an Eye - Jesse’s Fight

As some of you may know, my brother-in-law Jesse was involved in a freak dirt bike accident on August 17th. On an otherwise normal summer evening, Jesse, my sister Amy and my 5 year old nephew Brantley were outside doing what they love most, riding dirt bikes and playing outside. Before putting the bike away, it was “5 more minutes” that would change life as we know it. Jesse was not able to stop the bike and although he is an experienced rider and was wearing a helmet, the crash resulted in heavy bleeding from facial injury and traumatic brain injury. As he was being transported to the hospital, a blood clot formed at the base of his skull which resulted in a brain stem stroke.  

Jesse was stabilized after a few days in the ICU which gave us all some relief, but the world stopped when we received the news that as a result of the brain stem stroke, Jesse was "Locked-In."  Locked in Syndrome (LIS) is an extremely rare neurological condition that effects less than 1% of stroke victims. Most survivors of LIS cannot move any muscles voluntarily or communicate, except with their eyes. LIS patients can think and reason, but are unable to speak or move. Had the stroke not happened, Jesse could have walked away from this accident with just bumps and bruises. Unfortunately, this would not be the case.

After his first few weeks spent in the ICU on a ventilator fighting to stay alive, Jesse quickly realized he could communicate by blinking his eyes. He then discovered the use of an alphabet board to form words and later sentences...again, just by blinking his eyes. In October, Jesse was transferred to Shirley Ryan AbilityLab in Chicago where he began to talk, something we were told would be highly unlikely to ever happen again due to his locked-in state.

After 5 months post-accident, Jesse was able to return home in early January. While we are all incredibly grateful that he is able to live at home now with the support of his family and the ability to finally see and talk to those he loves the most, we are facing many challenges in regard to his care. Amy has put her 12 year career on hold and has taken on the full-time role as Jesse's caretaker, as well as full-time parent to Brantley. Jesse has worked hard his entire life and is fortunate to have wonderful insurance, but as you can imagine, his continued care at home and rehabilitation will require significantly more than insurance will cover.

Despite the traumatic brain injury, Jesse's brain has remained cognitively fully intact (we actually think he is even sharper and more witty than before the accident!) Through speech, occupational and physical therapy Jesse has had to reprogram is brain. At this point, Jesse still requires a tracheotomy tube to assist breathing and a feeding tube to eat. He has recovered some motor ability, but he is currently wheelchair bound. Jesse is determined and motivated to keep advancing and proving his prognosis wrong. We know he is a survivor and he has already proven this by fighting since August to defy all the odds stacked against him. Jesse will require continuous outpatient physical and occupational therapy, speech therapy, nutrition counseling as well as many other medical appointments multiple times a week. Transportation will be required to all of these appointments, along with medical supplies and medical equipment rental.

Our goal is to keep providing Jesse the resources he needs to keep improving so that he has the best possible chance to walk, eat, drive, etc. all of the "luxuries" we take for granted every day. Brantley’s wish is for his dad to be able to play outside again. Amy and Jesse, still newlyweds just shy of their 1 year wedding anniversary before this tragic accident happened, have so much more life to experience together.

Creating this GoFundMe page and your donations will provide financial assistance for Jesse’s continued medical expenses, therapy and care. No donation is too small and we are extremely grateful to anyone that donates and helps us share Jesse's story. Our hope is to some day in some measure pay it forward and share Jesse's success to give hope to others with the devastating prognosis of LIS. Anyone who knows Jesse knows that despite his own battle, he will continue to do anything in his power to help others in the future. 

*Additionally, we cannot thank the team at Aurora Summit ICU and Shirley Ryan AbilityLab for taking care of Jesse. Due to COVID-19 visitor restrictions, we have had to rely on nurses, doctors and other caregivers to care for him as if he was their own family member. You are all amazing for what you so selflessly do every day and Jesse being here with us today is because of YOU*

THANK YOU!!!

Check out pictures and videos of Jesse’s journey below: