Join Ivar's Fight for a Brighter Future

At the beginning of 2023, my husband Quinn and I were overjoyed to learn we were expecting twins—a boy and a girl. We eagerly prepared for the journey ahead, filled with excitement and hope for our growing family. But our path took an unexpected turn, one that would reveal both unimaginable challenges and the incredible strength of our son, Ivar.

Ivar entered this world as a preemie fighter. Born at just 4 pounds 4 ounces on July 20, 2023, he spent his first 152 days in the NICU—a journey marked by constant battles with breathing, feeding, weight gain, and countless struggles no child should have to endure. His condition was so complex that he was transferred to the highest-level NICU in Philadelphia, Pennsylvania.

From birth, Ivar suffered from severe acid reflux, a condition that has never improved and continues to cause him daily discomfort and feeding complications. He struggled to breathe on his own, consistently aspirated, and faced severe feeding challenges. Once he arrived in Philadelphia, doctors diagnosed him with laryngomalacia, a congenital condition where the soft, immature cartilage of the larynx (voice box) is floppy, causing it to collapse inward during breathing. Most premature babies outgrow this condition, but Ivar’s case was so severe that he did not. This led to noisy breathing (stridor), especially when he was lying on his back, feeding, or upset. He required corrective surgery and still battled to feed by mouth and breathe independently.

After weeks of struggle, Ivar moved from BiPAP to CPAP. Finally, in November 2023, he stabilized on nasal cannula oxygen support. When feeding continued to be difficult, doctors decided to place a G-tube, allowing him to finally get the nutrition he needed.

On December 19, 2023, Ivar was strong enough to come home—a Christmas miracle—but his journey was far from over.

To this day, Ivar is strictly G-tube fed, taking nothing by mouth. He is under the care of 14 different specialists at the Children’s Hospital of Philadelphia, attends multiple therapy appointments, undergoes sleep studies, countless follow-ups, and is on 8 different medications.

In addition to his many medical complexities, Ivar has been diagnosed with Angelman Syndrome, a rare genetic disorder that affects about 1 in 12,000 to 20,000 people worldwide. It causes developmental delays, issues with movement and balance, seizures, and little to no speech. He also has cerebral palsy, which further affects his muscle tone, coordination, and motor development. Right now, Ivar cannot sit up on his own, crawl, walk, or talk/babble.

His medical needs don’t stop there. Ivar has been rushed to the ER countless times and has endured multiple hospital stays due to severe illnesses. He spent 8 days hospitalized for pneumonia, 3 days battling rhinovirus, and additional stays for GI issues. When Ivar gets sick, he gets it hard, and recovery is always a long, difficult process.

Ivar has also undergone surgery for a non-descending testicle and has had several endoscopies to monitor his throat condition. Looking ahead, he faces surgery for a small optic nerve, which is crucial for his vision and development. While Ivar receives Early Intervention (EI) services, it is not enough to meet his growing therapy needs. Unfortunately, the additional outpatient therapy he requires is not covered by insurance, leaving Quinn and me to pay out of pocket.

After returning to work from maternity leave while Ivar was still in the NICU, I tried to balance it all, but the demands of Ivar's care, appointments, hospital stays, and therapies led to the loss of my job—a reality I understand but one that added to our financial strain. To make things even more challenging, I legally cannot be Ivar's paid caregiver in Pennsylvania due to state laws and the involvement of his biological mother. I have appealed this decision three times but was told I lack the "proper training," despite being the one caring for him every single day. I have also applied for SSI (Supplemental Security Income) three times since December 2023 and have been denied each time. I recently appealed the decision, only to be denied yet again.

Quinn now works two jobs, seven days a week to help make ends meet, but even with his hard work and sacrifice, it’s still not enough to cover Ivar’s growing medical needs. Our journey has been made even more challenging by mounting medical bills. The cost of Ivar's 152-day NICU stay, multiple hospitalizations, surgeries, and specialist visits has left us with overwhelming costs. We are doing everything we can to keep up, but the expenses keep piling up faster than we can manage—especially with ongoing therapies, uncovered medical supplies, and travel expenses. Balancing the needs of Ivar, along with the financial and emotional toll, has been incredibly challenging.

Despite all of these challenges, Sidney, Ivar's twin sister, continues to bring light and joy into our lives. Her strength and resilience are a constant reminder of the hope and determination that keep us going as a family.