Max’s parents discovered Dr. Jerry Mendell, a pediatric neurologist at Nationwide Children’s Hospital in Columbus, Ohio, who has been working to cure Max’s exact form of LGMD for over a decade. Max was invited to be the first child to be part of Dr. Mendell’s gene therapy clinical trial. On August 4th, Max received the gene therapy injections into his legs. All went well and Max will be travelling back to Ohio for the next few months for more injections and follow up. Read more about this exciting new clinical trial for LGMD2D Patients.
Back at home, Max has a long road of recovery ahead, including lots of physical therapy and strength training for his legs. We are hopeful that Max will have a good outcome innovative procedure.
A Teachable Moment…Be Ready for the Cure
What set Max apart and allowed him to receive this innovative therapy is that Dr. Mendell felt he was “an ideal candidate”. This is due to his family’s persistent efforts to maintain Max’s strength, ROM and mobility by doing exercises and stretches at home on a daily basis.
Many families are looking for something that will improve their child’s condition, but it is the daily maintenance and diligence of some very simple activities, that allowed Max to be “ready for the cure”. Ongoing support by his family and community will continue to helpMax in his brave and courageous adventure.