In June 2024, a little warrior named Brandon entered the world, radiating love and HOPE. From the start, Brandon’s journey was extraordinary. 

When Brandon was born, he was almost nine pounds, but he experienced complications that didn’t make sense. He had trouble breathing, regulating his body temperature, and couldn’t eat—these things weren’t common for a nine-pound baby. After ruling out everything, the Helen DeVos Children’s Hospital specialists decided to do genetic testing. 

In a matter of days, Brandon’s parents learned he was born with PURA syndrome, a genetic neurodevelopmental disorder caused by mutations in the PURA gene. This leads to intellectual and physical disabilities. 

PURA is an incredibly rare syndrome. There are only 750 individuals with his diagnosis in the entire world.

There are few specialists for PURA syndrome, but a small, growing network of clinicians and researchers with expertise in this rare disorder does exist. The Jobins joined a Facebook group—Parents of PURA Syndrome—the day Brandon received his diagnosis. 

Because no doctors at the hospital had treated a patient with PURA, the Jobins contacted their new Facebook community with questions. This connection became key to advising the family and their team of specialists.

The diagnosis hit hard and initially was difficult to process, but they knew that having answers was the first step to overcoming it. Brandon’s parents are optimistic, saying, “PURA was only discovered and labeled as a syndrome 10-11 years ago, so we have HOPE in research.” 

This rare genetic condition brings unique challenges, but the Jobins see opportunities for immense growth and resilience for Brandon. They are determined and hopeful, driven by their love for Brandon. Dad said, “PURA doesn’t define who Brandon is—PURA is just a part of Brandon.” They are in tune with Family Hope Foundation’s philosophy that individuals aren’t defined by disability.

PURA syndrome affects every aspect of development. Brandon’s muscle tone is one of his biggest challenges—he may never be able to walk. 60% of PURA patients also experience seizures. Like many diagnoses, PURA has a spectrum. Brandon’s position on the spectrum is high, and his struggles are heavier than most. His development will be slower, with the possibility of regression.

There is no cure for PURA syndrome. Treatment focuses on managing symptoms through a multidisciplinary approach. Brandon sees specialists in almost every department—cardiology, gastroenterology, neurology,  orthopedics, pulmonology, and more. It’s a lot. The list is long and very costly, but it is also essential.

Another layer is the supportive therapies Brandon needs—physical, speech, and occupational therapy—all are long-term needs. These therapies are essential for Brandon because their outcomes will improve his quality of life. Again, the list is long and very costly, but it is also essential.

They feel blessed to have good insurance, but it doesn’t cover everything. Meeting one’s medical ceiling—an unplanned expense—presents financial challenges. Jenna resigned from her job to meet Brandon’s needs and manage all the doctor’s appointments and therapies. Abruptly, they were dependent on one income.

Brandon will celebrate his first birthday in June, but it wasn’t an easy year. He bravely endured three hospital stays totaling 55 days. Extended hospital stays are exhausting for parents.  We asked the Jobins where they found their strength. They have a village that has stepped in to help in many ways. Jenna’s parents moved closer to lend support and lighten the load. Mom said, “One of the hardest parts was also caring for our other son, Hudson, who is four years old.”

Their village gave them the fortitude to push through. With every challenge, Brandon had a community of caring doctors, nurses, therapists, and a devoted family—all determined to give him the best chance at a bright future.

A key part of their village was the important connections they made through the PURA Syndrome Foundation, connecting with people worldwide. It was here that they met Dr. Sanchez, a pediatric neurologist who also had a child with PURA syndrome. 

Brandon was very close to getting a tracheostomy tube, a “trach,” to facilitate his breathing. Dr. Sanchez provided suggestions and medical knowledge that gave them an option to try medication first. It has been successful for Brandon, and he is breathing independently. He doesn’t even need supplemental oxygen. This is a big WIN for Brandon.

Brandon’s bravery and strength remind them that they can achieve the extraordinary when we come together. Jenna and Brian said, “Let’s continue to grow his village, spread awareness, and celebrate the milestones—big and small—that make every day a victory.”We could see how proud they were of their significant WINS. We’re excited to share just a few with you.

• Mom was told she wouldn’t be able to breastfeed. With determination, she was successful. This was significant because she knew it would help strengthen the muscle tone in Brandon’s face, laying a foundation for possible speech.
• He advanced from nursing to eating purees. 
• Brandon is gaining core strength. During our time together, he was constantly fighting to sit on his own, which was fun to see!
• He no longer needs oxygen delivered every three days.
• Brandon continues to breathe without a “trach.”
• As Brian says, “Every month that we stay out of the hospital is a WIN.”

We believe parents always have one special WIN that brings immense joy. Says the Jobins, “One of the biggest WINS was hearing Brandon laugh. When we first heard his laugh, we knew we had to record it.”

Listen to Brandon’s laugh: https://youtube.com/shorts/B2sXmzTiYDw?feature=shared

Not many individuals with PURA talk—95% are nonspeaking. Mom is optimistic: “We’ll have to wait and see what speech therapy can do for Brandon. Previously, I was a special education teacher. I know the world of augmentative and alternative communication devices and different ways of communicating. I know we have options.”

Mom says, “But Brandon’s journey isn’t just his—it belongs to all of us.” His village is ever-growing, as his family works tirelessly to raise awareness of PURA syndrome and connect with others on similar paths. 

Brandon’s progress is a testament to the power of love, dedication, and community. His story inspires others to rally around families navigating PURA syndrome and to support the research and care that make these victories possible. His parents said, “Together, we can strengthen not only Brandon’s support system but also the global PURA syndrome community, fostering hope and creating opportunities for every child with this condition to thrive.”

They truly believe that with HOPE, anything is possible. If there’s a hurdle, they’ll tackle it. Due to Pura syndrome and his very low tone (Hypotonia), there is only one way to offset this: strength. 

Family Hope Foundation’s scholarship helped make intensive therapy at the Conductive Learning Center possible. 

Mom and Dad said, “Your foundation allows us to get the intensive therapy Brandon needs. His scholarship gives us more hope. We now have another foundation that has opened its arms to us. We are fortunate that you support all disabilities and diagnoses. We want to spread the word about Family Hope Foundation so that others can get the resources and support they may need.” 

As we wrapped up our time together, we asked Jenna and Brian about their dreams for Brandon. It was an emotional moment for everyone. With tears in their eyes, Jenna and Brian said, “We are a family that loves to do things, so even if we have to bring Brandon in a wheelchair, we will. We will always figure out how to make things work. We will always have Hope.”