The first installment in a series of profiles featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community.
Jonathan and His Foster Son Christopher Face the Challenges of Nemaline Myopathy Together
Dallas, Texas resident Jonathan Roberts isn’t your average dad. He’s a respiratory therapist who formed an extraordinary bond with a tiny patient named Christopher. Their story, one of unwavering love and resilience in the face of a rare disease, is a testament to the strength of the human spirit.
AN INSTANT CONNECTION
Christopher’s journey began at just 29 days old when he arrived at the hospital where Jonathan worked. “There was something unique about him,” Jonathan recalls. “His eyes spoke volumes, and his little smirk stole my heart every time.”
A LIFE-CHANGING DECISION
Months later, a life-altering situation arose. Christopher’s biological parents, unable to manage his complex medical needs, faced an agonizing choice: withdraw care or seek foster care. Thankfully, they chose the latter. After 352 days in the hospital, Christopher came home with Jonathan and his wife, becoming their fifth child.
LIVING WITH NEMALINE MYOPATHY
Christopher has Nemaline Myopathy (NM), a rare muscle disorder that affects his mobility. Jonathan describes Christopher’s life as drastically impacted by NM. He relies on a ventilator, a standing frame, and a wheelchair for daily activities. Yet, Jonathan emphasizes, “Christopher’s mind is so sharp. He’s incredibly intelligent and communicates in amazing ways.”
FINDING STRENGTH IN CHALLENGES
Despite the challenges, Jonathan finds immense reward in caring for Christopher. “He’s passionate about his favorite shows (Pocoyo, Little People, all the Toy Stories and Moana) and loves to be read to,” Jonathan shares. “His intelligence shines through, and he overcomes obstacles one step at a time.”
A BEACON OF HOPE
Jonathan acknowledges the difficulties of navigating an unpredictable illness. “We have constant preparation and planning. Always for the unknown or an emergency.”
However, his focus remains on hope and making Christopher’s life fulfilling. “We try to move him as much as possible and plan outings,” he says. “Our greatest hope is for a cure, but for now, we want Christopher to be happy and continue to develop.”
RAISING AWARENESS & RUNNING FOR A CURE
Jonathan is taking his dedication a step further. This year, he’ll be running the New York City Marathon as part of Team AFBS (A Foundation Building Strength) to raise critical funds for Nemaline Myopathy research. You can support Jonathan and his fight for Christopher by donating to his fundraising page!
MISCONCEPTIONS & LOOKING TO THE FUTURE
Jonathan also aims to raise awareness about misconceptions surrounding NM. “I think often people think just because Christopher can’t move well that he has something wrong with his brain or that he has neuro deficits. This is far from the truth Christopher is extremely intelligent,” he clarifies. “Many people don’t understand disabilities and are often scared of them instead of accepting. Christopher is just a normal little boy that struggles with moving well.”
Jonathan dreams of a future where Christopher can run and play freely. He expresses his unwavering support for ongoing research, hoping it will benefit not only Christopher but everyone affected by NM.
AN INSPIRATION
Jonathan and Christopher’s story is a powerful reminder that love and determination can overcome immense challenges. Their journey serves as an inspiration to the entire Nemaline Myopathy community, highlighting the importance of ongoing research and support.
An amazing testimony of faith, love and hope! May GOD continue to bless Jonathan, Jennee, Christopher and the entire family!