Why we started the non-profit

Jake’s stroke occurred just shortly after his seventeenth birthday. He had the whole world ahead of him. He was in his junior year of high school, applying to colleges, participating on a competitive swim team and in drama club. He was ready to take his driving test for licensure the week it all fell apart. 

During the fall of his junior year he had begun showing symptoms of Ulcerative Colitis (a chronic inflammatory bowel disease that causes ulcers and inflammation in the lining of the colon and rectum). He was not yet diagnosed or treated when he got sick with the “flu”. It was February of 2020 just before the world shut down with covid. We had been to urgent care and his primary care physician, both who were baffled by his symptoms of intermittent fever, dehydration, diarrhea, and a small amount of blood in his mucus. 

We were downstairs when we heard a crash on the second floor. Jake called for help but it was already too late. He had lost the entire use of the left side of his body. He had suffered a massive hemorrhagic stroke on the right side of his brain.

Our local hospital was, perhaps understandably, slow to treat, none of us entertained the idea that a seventeen year old in such good shape could have suffered a stroke. I’m a nurse, in hindsight it was obvious. Jake was heli-vaced to Children’s Hospital of Philadelphia where we were told he had a 50/50 chance of surviving the craniectomy to relieve pressure from the swelling brain. He survived. We were then told not to expect much and that the next week would be more telling. Jake spent two weeks in the PICU on a ventilator. 

Jake spent the next 3 months learning how to swallow, talk, and walk again in in-patient rehabilitation. Two years of various therapies outpatient. Four years later, two more brain surgeries Jake pushes ahead. The gains are slow but, as many people said, he was lucky the stroke happened when he was young and his brain is still growing. Jake still has left sided hemiparesis, left side hemianopsia, left sided weakness, and a multitude of cognitive holes. He suffers from fatigue, headaches, anxiety and occasional depression but he is the most resilient young person I know.  

We feel called to start this Non-profit organization because there is a huge hole in support for young adults who have suffered brain injury. Young adults are at a unique stage of development. Their brains are still “growing” and it is the stage where people between the ages of 18-30 obtain higher education and careers. They establish relationships and start a family. They become independent productive members of society. But if these goals are not achieved due to a traumatic or acquired brain injury the life long effect of missing this developmental marker can be devastating. Get Out There with Acquired Brain Injury, GOT ABI,  wants to help young adults with brain injury overcome the isolation, empower them to foster skills to become independent and bring awareness to the unique needs of this demographic.

Continue to like, follow and share our story and the growth of GOT ABI. Jake will bring his perspective as a survivor. I will bring mine professionally as a nurse and also as Jake’s mother. We want to hear your story! In a quote from John Green, "Just remember, you are not alone, in fact, you are in a very common place with millions of others. We need to help each other and keep striving to reach our goals".