Thank you so much for supporting our family as we navigate caring for Tobias and giving him access to the things that will benefit him. Tobias was born prematurely at 33 weeks. Since the very first day, Tobias has repeatedly had his fist up to show us he is fighting. With being premature, there are often many things that babies are diagnosed with, specifically chronic lung disease. At 10 days old he had to be transferred to a level iii NICU, where they discovered, through a lumbar puncture, he had viral meningitis and adenovirus. Tobias was a very sick little guy and due to his lungs not being fully developed took a little more support and time to get better. After 3 weeks of recovery, Doctors began to become concerned when he wasn't meeting or even close to milestones compared to other babies born around the same time point as him. They strongly encouraged some genetic testing. The microarray results came back with abnormalities to his 18th chromosome. The geneticist mentioned they never saw the combination of abnormalities like the way Tobias has them and wanted to look further at the make up of the chromosome through a karyotype test. It showed that he is missing portions of the chromosome, has duplications of some of the chromosome, a portion is normal, and it is in a ring shape (deletion of 18p11.32p - q11.1, duplication of 18q21.2-q23, and deletion 18q23). We were told of everything that could ever effect Tobias at this time. We were told there was a potential for him to pass away before turning 1, he would never use his voice, he would have major intellectual and developmental delays, he may have seizures, he may not grow, he could go blind, and he could go deaf. We are strong believers that the Lord knit Tobias together in my womb and would make a way for him. Tobias wasn't allowed to practice eating by mouth (PO feeds) because his respiratory rate resting was always too high for them to feel comfortable to attempt. At this point we transitioned to a hospital that had a specialized feeding program. Just like in the nicu, Tobias wasn't able to practice feeding too frequently because he was always breathing too fast. After a month in this hospital, we decided to go with him getting a g tube to be able to come home. I had decided at this point I would need to quit my teaching job to solely focus on all of Tobias' cares. After a month and a half of being home, we had our first out patient cardiologist appointment. At this appointment, it was noticed that Tobias' Pulmonary valve stenosis had increased from mild to severe. Due to how small Tobias was, the doctor had to meet with the whole department to discuss Tobias and come up with a plan that would be safe put the least amount of stress on Tobias. Within two weeks we were doing a heart catheterization surgery of the pulmonary valve. It was wild to see the difference in Tobias' body after that surgery. His whole appearance had changed and energy level. We then went through some issues with his formula not being digested and having to change it. We also then trialed a new intensive program that was 3 days a week 3 hours a day for 6 weeks (Tobias was 7.5 months). Tobias went from not moving or being interested in anything, to activating his muscles to roll to his side, grab things with his hands, and hold up his head. He also began mimicking a lot of facial expressions and sounds at this point. During this time we learned he would need a third surgery. In November of 25, Tobias had his orchiopexy surgery and a small hernia repair. The winter season was very rough for him during this time. He was sick a lot but recovered from each sickness easily without needing a hospitalization. In May of 2026, Tobias began another therapy intensive (DMI) which was 3 hours a day each week day for 4 weeks. Tobias ended up missing over half of this time from getting sick. He was really struggling with his breathing and respiratory system. He had seen his pediatrician and pulmonologist multiple times to try and get his body to recover. On 6/10, Tobias turned purple after struggling with breathing and we had to rush to the hospital. He was admitted to the picu for 13 days for respiratory failure caused by rhinovirus and a super imposed pneumonia. While hospitalized he had to use a mechanism that is the equivalent to an iron lung. I noticed a pattern that every time Tobias was fed by his g tube that his work of breathing began to decrease. Since his stomach stopped processing his food, we trialed a NJ Tube and it was able to give him nutrition without the higher risk of aspiration. At this point we decided it would be best to transition his g tube to a gj tube. Typically Tobias would take 3-4 months to gain a pound, but after the gj tube he gained 3lbs in 1 month! Tobias still has a lot of work to do and we are here rooting him on each step of the way. Tobias is such a gift and we are beyond blessed to have him. Thank you for supporting our family and helping to take away the financial toll and stress of having a child with medical complexities (doctor appointments, medical supplies, specialized formula, hospital visits, traveling medical supplies, accessible clothing, and more) and a one person income for a family of 4. We appreciate you!