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Within minutes we were at Saratoga Hospital ER and within minutes the word seizure was being uttered. That moment began a long, complicated medical journey with Jake. And in those initial moments, I learned so much about who my son was and about his incredible character. Those initial hours at Saratoga Hospital were horrible. There was no pediatric doctors or nurses so there was no one equipped to get an IV started. If I knew then, what I know now, I would have grabbed him and ran. But I didn’t know anything then. Through it Jake was amazing. He maintained a mostly happy demeanor, even flirting with the nurses. As it became clear that we would need to go somewhere else for his care, we decided we wanted to go back to Boston. Having just moved from there 6 months ago we realized we needed to get back there. Unfortunately en route to Boston we made a stop in Springfield where things made a drastic turn for the worse. While treating him for seizures using a medically induced coma, he suffered a major reaction to one of the medications and we were med-flighted to the ICU at Children’s Boston, which led to a 117 day stay.
Through those 4 months, we learned life lessons that we never imagined having to learn. Things we had previously thought to be important, were suddenly much less so. We had to figure out how to keep our family together in a hospital located 180 miles from home. We ended up getting a hotel room near the hospital for Ethan and I and Brian stayed at the hospital. We enrolled Ethan in a daycare program so he could be with friends and play during the day. Brian and I were at the hospital with Jake everyday and Ethan joined us in the afternoon. Then Ethan and I went to the hotel and Brian did the overnights with Jakey. Jake endured countless tests, medications, induced comas all in an effort to discover what caused that initial seizure. We never did find that out, although at the time of his death it seemed quite likely that he had some form of a leukodsytrophy. And throughout the stay, Jake lost all his previously developed milestones. He could no longer eat by mouth, he couldn’t hold his head up and he couldn’t stop having seizures.
Eventually, we were released but not after Jake celebrated his first birthday at Children’s Hospital Boston. We came home a much different family than we left. We had not been in our home since we left it 117 days before at 3:00 AM. We quickly learned how to acclimate to this new life and the importance of parent advocacy. We fought hard to get as many services as we could. The support from our community was overwhelming and we began to forge new friendships and relationships with a remarkable group of therapists, case workers and doctors.
Over the course of the next three and half years, Jake continued to endure countless tests, operations and procedures. He had many EEGs, MRIs, CT scans, PET scans, biopsies and one over 6 hour long hip surgery. He fought through liver disease, osteopenia which resulted in a broken femur, fluid on the brain, various infections and pneumonia. He persevered through so much adversity and handled it all like a trooper.
Throughout it all, he was truly a real fighter. He quickly regained his ability to eat by mouth and while it wasn’t easy we were so proud of him. People often assumed he was fed by a G-tube and we were always proud that he could enjoy that piece of independence. He worked so hard with therapies and while there were lots of ebbs and flows – we were proud of him every step of the way. He walked with the assistance of his PT on a lite gait trainer, participated in aqua therapy and did many weight bearing activities with his OT. When you would least expect it, he would make a leap forward – either initiating movement with his legs or holding himself up on all fours. While he could not communicate in the traditional sense, those who knew him well and were patient enough to notice could understand him. His big brown eyes and facial expressions could say more than words ever could.
Up until his passing on December, 8, 2010, Jake continued to inspire those all around him. Now in a place where he has no more seizures, we know he is safe and happy as his big brother Ethan often reminds us, “Jakey is running and playing in Heaven!”
We are proud to announce that as of March 17, 2011 Jake’s Help From Heaven, Inc. is recognized by the State of New York as a not-for-profit corporation. We began this foundation because we knew first hard the challenges in raising a medically fragile individual with multiple disabilities. All of Jake’s doctors were at Mass General Hospital in Boston so every 2-3 months we returned to Boston to visit his specialists. These trips could not be made in a day so there were often multiple hotel stays, meals out and various expenses. In addition, we often found ourselves needing to purchase items that would help Jake. Since he was immobile, it was important to find a myriad of ways to carry him. We needed a specific stroller to support him while out for the family, a special neck brace to help him with his head/neck strength, a stander for weight bearing, a custom wheel chair for school, a supported seating system on each floor of our home, a bath seat, and countless more things. Some which were covered through insurance, some were not. Through this foundation, we are dedicated to supporting individuals and families with multiple medical challenges and disabilities. Through a grant application process, individuals will be able to apply for reimbursement for medical travel, medically necessary supplies or equipment as well as medically convenient items.
On Sunday, May 1st we are holding our first fundraiser at Saratoga Strike Zone. For $20 per person, you can enjoy two hours of bowling and shoe rentals, two pieces of pizza and soda, a ticket for ballocity, a ticket for bumper cars, and 4 arcade tokens. Face painting will also be available (sponsored by Gaffney’s). Donations and sponsorship opportunities are available and all profits will go directly back into supporting families and individuals with multiple medical challenges and disabilities living within 100 miles of Saratoga Springs, NY.