This site is dedicated to supporting Dominik Kapusnik, or "Bobek".  

Born on March 1, 2021, Dominik’s life began with challenges from the very start. Two months before his birth, he and his mom were hospitalized for close monitoring. Shortly after delivery, Dominik was admitted to the NICU due to respiratory distress, jaundice, and low calcium levels. After ten long days, he was finally able to come home. Even then, the challenges continued. Dominik faced milk intolerance, anemia, developmental delays, and ongoing medical concerns.

As time went on, it became clear that Dominik was not meeting developmental milestones. In August 2021, he was hospitalized for the first time with RSV. Just three months later, he returned to the PICU with three viral infections. One day before Christmas Eve 2021, Dominik experienced his first febrile seizure and spent five days in the hospital. Due to these repeated medical emergencies, Dominik and his parents, Jessica and Peter, underwent genetic testing. On April 22, 2022, Dominik was diagnosed with SPG47 (AP-4 HSP) — a date that heartbreakingly marked the two-year anniversary of the loss of his sister, Mila, who passed away after 36 weeks of pregnancy.

Dominik’s medical journey has included six febrile seizures, numerous EEGs and MRIs, and nearly 18 months of trial and error to find medications that could help control his seizures. Many of his seizures lasted over an hour and required ambulance rides and emergency hospital visits, as no rescue medication could stop them at home. Along the way, Dominik also battled chronic ear infections and congestion, eventually requiring adenoid removal and ear tube placement.

Despite everything, Dominik remains a hard worker with a joyful spirit. Much of his progress is thanks to an intensive therapy schedule including physical therapy (PT), occupational therapy (OT), speech therapy, dynamic movement intervention (DMI), Masgutova Neurosensorimotor Reflex Integration (MNRI), and craniosacral therapy.

Dominik has completed numerous intensive therapy programs, including six intensives at the NAPA Center, one intensive at Springboard, and two intensives with DMI on the Fly, with another planned for this summer. He has also completed MNRI intensives in the U.S. and abroad. None of this progress would be possible without the incredible support of family and friends who have helped with childcare, transportation, and endless encouragement.

In March 2025, after nearly two years seizure-free, Dominik experienced another seizure, followed by two more in May and October. We are actively working with his medical team to determine potential triggers and continue adjusting care to keep his seizures under control.

Today, Dominik continues to make meaningful strides. He can walk with support, cruise in his playpen, sit independently, stand on his own for up to two minutes, and has begun taking independent steps. He uses a gait trainer, Crocodile walker, RIFTON stander, AFO braces, turtle braces, and is learning to communicate using his AAC device. He is making many new sounds and can say words like “mama,” “ball,” and “hi,” while also signing “I want” and “more.”

Dominik has started school and absolutely loves it. He receives PT, OT, and speech services at school, adores his teacher, and is especially proud of riding the bus. He will begin kindergarten this September.

Outside of therapy and school, Dominik is full of personality. He is obsessed with playing ball, loves saying hi to everyone he meets, and is happiest when he hears his sisters laugh. He’s becoming more independent with self-feeding and loves snacks—especially oranges—and enjoys foods like liver, avocados, and beets. He still gives the best kisses and his joy is contagious.

We continue to do everything we can to support Dominik’s growth and health. In addition to traditional therapies, we’ve added a wellness chiropractor to his care team, are running additional health testing, and exploring supportive approaches such as detox protocols and red light therapy.

Most importantly, Dominik remains the happiest little boy, full of love, determination, and resilience. He inspires us every single day, and we will never stop fighting to give him the best possible future.

Spastic paraplegia 47 (SPG-47) is an incredibly rare and progressively debilitating neurodegenerative genetic condition. Those affected often face challenges such as developmental delays, intellectual disabilities, speech difficulties, and seizures. Many of these brave children are born with diminished muscle tone, which over time turns into increased muscle stiffness and spasms. This often affects their legs, making walking an immense challenge, and in many cases, leading to reliance on a wheelchair. For some, this condition can even progress to affect their arms and torso, significantly impacting their daily life.

Did you know? Fewer than 15 cases of SPG-47 have been identified in the United States. Globally, there are only 249 known patients diagnosed with the AP-4 category, which encompasses SPG 47, 50, 51, and 52. Each of these subtypes arises from a rare genetic anomaly. In simple terms, a crucial protein isn't produced the way it should be due to this genetic change, especially affecting an essential region of the brain—the hippocampus. Recent research points out that this malfunction is linked to an imbalance in a vital compound called ATG9A.

What gives us hope is that since the manifestations and outcomes of these four subtypes are so alike, we believe that finding a solution for one can potentially mean hope for all. Join us in shining a light on SPG-47 and its counterparts. Together, we can raise awareness, foster research, and bring hope to these brave children and their families.