We’ve seen many GoFundMe posts over the years, but I never thought I would be creating one, and especially not for a situation like this.

We are Brian and Alicia, and this is the story of our grandson Jakob and Jakob’s Final Journey, a heartbreaking story of the most amazing little boy we have ever met and his hard-fought battle to beat the odds. A story about his brave mom Kristen who spent the entire time right by his side, keeping him calm, being his best advocate, and getting a school-of-hard-knocks medical degree through real life experience and lots of research during a 66-day hospital stay. A story about our son Aaron, who stayed at the house with their 8-month-old baby Nathan, making sure all his needs were met. Aaron would drive 90 minutes each way, sometimes every day, to see Jakob at the hospital and take Kristen to lunch or dinner. A story about other family members who flew in from across the country to help at the house, provide much needed companionship at the hospital, or simply to let Aaron, Kristen, and Jakob know they cared.

Jakob was such a light in the world, impacting everyone he met. Alicia always called him Joyful Jake. He would say hi to strangers walking down the street and they would always smile. He was so full of energy and life. He dealt with multiple health complexities over the years, but he would always make some miraculous recovery and get better. He truly was a miracle from the start.

On April 2nd, after a couple weeks of feeling “yucky” our 6-year-old energetic little boy was admitted to the hospital at UCLA Medical Center. Following several weeks of inconclusive tests, they found a virus attacking his lungs. During his first 4 weeks in the hospital, Jakob continued live life as they tried different treatments. He would facetime with family, including his baby brother Nathan. He was practicing his handwriting and playing with the new toys he received. Jakob even got to go outside at the hospital and enjoy a short amount of time away from his room. During those weeks, his levels of oxygen support fluctuated, and he was moved to and from the ICU when the needs required higher flow rates. But, his energy levels were wearing down as even the shortest FaceTime calls would wear him out.

After 31 days in the hospital, Jakob’s oxygen needs were so severe that they needed to intubate him to get more oxygen to his system. Once intubated, it quickly became clear that Jakob’s lungs were no longer working to exchange the oxygen and carbon dioxide, and needed to transition immediately to a more intensive treatment called an ECMO machine. The ECMO did the work of his lungs so his lungs could rest and hopefully begin to recover.

While on the ECMO machine, Jakob was sedated so we were no longer able to hear his voice. There were times when his sedative would wear off a bit and he would answer yes/no questions and we could get a peek into what he was thinking. Those times were not common, but provided a heart-warming touch that our amazing little guy was still in there, and putting up a fight because Jakob has always been a fighter. They were also heartbreaking as the realization that he was aware was evident.

Unfortunately, Jakob’s little body gave out before his lungs could heal, and on June 7th, around 11pm, he passed away in the arms of his mom and surrounded by people who loved and adored him. Our lives will never be the same without Jakob, but they will also never be the same because of Jakob.

During the 2-month hospital stay, the family took on many expenses and burned through significant amounts of money. While the Navy provides great medical insurance, it has also isolated them thousands of miles from family and a solid support system, which amplified the stress of having a little boy in the ICU. California gas prices led to $100 tanks of gas every other trip Aaron took to the hospital. While staying at the hospital, with no fridge or microwave, Kristen was forced to eat in the cafeteria or nearby restaurants for every meal. Family members bought plane tickets and hotel stays to help take care of Nathan or be close to the hospital to support Kristen.

Now that we are at the unthinkable time of planning a funeral for our Joyful Jake, there are more expenses to consider. Additionally, once things settle down, Aaron, Kristen, and Nathan plan to take a much-needed trip away from all that’s transpired in recent months. They don’t want to take an exotic trip, but simply want to travel to the familiar places of their homes so they can see and be near family for love and comfort.

Thank you to the many who have asked how to help, and to those who might not have asked directly but have thought and wondered about ways to help. It is comforting to know others are thinking of your family when you can’t think of anything but for your grandchild to get well. If you feel led to do so, please give any amount, and consider sharing this with your family and friends. Jakob touched many people in his lifetime, and we pray that his story will continue to bless others in the days to come. He was such a special little boy, and our lives are forever changed from being his grandparents.