Joshua, now 6 years old, was diagnosed with SMA Type 1 while still in utero. This condition, characterized by muscle weakness and atrophy, led to neuromuscular scoliosis, which was first observed when he was about 11 months old. He currently receives treatment from Nemours Children’s Hospital, Florida.
For the first few years of his life, Joshua’s condition was a constant battle. “Joshua wore a back brace for at least 4.5 years, 24/7, with breaks only for bathing,” recalls his grandmother, Claudia. The brace was necessary to manage his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA. “Every cold or flu he caught turned into a hospital stay and intubation on several occasions,” shares Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.”
A pivotal moment in Joshua’s medical journey unfolded when his pulmonologist in Miami pointed them toward Nemours’ orthopedic specialists. “She had another patient with SMA and scoliosis who was extremely happy with Nemours,” Claudia explains. This referral set Joshua on a path to the care and treatment that would impact his life.
Upon arriving at Nemours Children’s Hospital, Florida, Joshua’s dedicated care team recommended halo traction and rod placement surgery. “From the moment we arrived for the first surgery to place the halo, to the day we left after recovery from the second surgery (58 days later) everyone from Nemours that came in contact with Joshua was amazing,” shares Claudia. “Dr. Lovejoy and his staff were always professional, kind beyond words, and very attentive to Joshua’s needs. They always made time to answer questions and explain each step in the process. The nurses and assistants on the rehab floor went above and beyond for Joshua. They became a part of Joshua’s and my life. We look forward to our follow ups to see Dr. Lovejoy. We also take the time to visit the rehab floor just to say hello. My absolute favorite thing about them ALL is how they treated Joshua as if he were a family member of theirs. They showed him kindness, compassion, and, most of all, love.”
The results of Joshua’s halo traction and rod placement surgery were remarkable. “Recovery has gone well, and Joshua looks like a new little man,” Claudia shares. Freed from his back brace, Joshua’s breathing has improved significantly, and he has managed to avoid hospital stays despite a few colds. Claudia acknowledges the initial fear of being four hours away from their care team, but frequent follow-ups and open communication with Dr. Lovejoy have eased those concerns.
Looking ahead, Joshua faces a couple more surgeries to replace the existing rods and eventually spinal fusion. “We are happy for the progress he has made and the benefits he has gained,” shares Claudia. “Although another surgery brings some unrest, we are blessed to be in the hands of Dr. Lovejoy and the team at Nemours’ orthopedic department.”
For families facing similar challenges, Claudia offers this advice: “I would not hesitate to do it all over again. The improvements were well worth the time, fear, pain, and recovery,” she says. “The journey for our family to get to this point did not come easy, but I am so thankful that it led us to Nemours.”
