Support Benjamin's Battle with CAMK2B

Help Benjamin Fight CAMK2B – Our Little Warrior Needs Support

My name is Shantel, and I am the proud mom of an incredible little boy, Benjamin. At just eight years old, he is already the strongest person I know. Recently, we received life-changing news—Benjamin was diagnosed with a CAMK2B genetic mutation, an extremely rare condition with fewer than 400 known cases worldwide. There is no cure, and very little research exists, leaving us with more questions than answers about our future.

For years, we’ve been searching for what was wrong, enduring countless tests, hospital visits, and specialist appointments. Now, with this diagnosis, our journey has taken an uncertain path—but one filled with determination to give Benjamin the best quality of life possible.

Despite his young age, Benjamin battles daily pain so severe that he requires 1,200 mg of Gabapentin per day just to cope. His muscles weaken, making simple things—like playing with friends—exhausting. He has already missed over 30 days of school this year, and nearly 96 days last year due to his condition. Even when he is in school, he struggles to keep up. He often has to rest in the nurse’s office just to make it through the day, and his gym and recess time have been reduced because his body simply cannot handle the full amount of activity. Some days, he walks and plays like any other child; other days, he can’t even stand on his own.

We are now adding aquatic therapy to his treatments in an effort to ease his pain and improve his mobility. Alongside this, we are working with specialists in Rhode Island and Boston, including a genetics team at Boston Children’s Hospital. Discussions are underway to start a comprehensive pain management program in Boston—a plan that will involve more travel, additional expenses, and even more time away from work. I have already lost multiple jobs over the past few years due to the time needed to care for Benjamin, and the financial strain is overwhelming.

In addition to addressing Benjamin’s immediate medical needs, we are also connecting with a research group in The Netherlands that is diligently working to better understand CAMK2B. They are maintaining a registry of diagnosed cases and offering parents the chance to participate in questionnaires and virtual meetings at their convenience. Another valuable way to contribute is by allowing them to include your medical records in their study. Since CAMK2B is so rare and still largely uncharted, every piece of information is crucial to helping doctors and researchers thoroughly characterize the condition.

Every donation, no matter the size, will go directly toward:

• Medical care and therapy expenses for Benjamin

• Travel costs for specialist appointments

• Home healthcare needs

Your support not only helps us manage Benjamin’s immediate challenges but also contributes to a broader understanding of CAMK2B that could benefit many families in the future. If you’re unable to donate, please consider sharing our story or even connecting with the research group in The Netherlands to lend your voice and support.

Benjamin is a fighter—my little warrior who meets every day with courage and a smile, even on the toughest days. He is my hero, and I will never stop fighting for him. Thank you from the bottom of our hearts for being a part of his journey.

With love and endless gratitude,

Shantel & Benjamin