Our Story
Isaac Christian Charities was founded in 2022 with the express purpose of striving to expand access to novel and alternative therapeutic paradigms within established therapy centers. By providing equipment and devices that are supported by scientific research, but not yet adopted into traditional medical practices, we aim to increase and support research and education for the treatment of children affected by rare diseases. At our core, we seek to fund and introduce techniques and technologies aimed to vastly improve quality of life and independence for children like our son.
Isaac Christian was born in 2019 after a normal, healthy pregnancy. He developed normally for the first three months of life and then began exhibiting cervical and truncal hypotonia, as well as difficulty drinking from a bottle. Over the next few months, his condition continued to deteriorate despite multiple medical evaluations and physical therapy. Lab results revealed slight alterations in thyroid levels, but every other lab test ordered showed no clear answer to the deterioration in neuromuscular functioning. Finally, Isaac was admitted to the hospital after continuing to lose weight. His diagnosis at the time of "failure to thrive" felt inconclusive and genetic labs were sent off after a 10-day hospital stay. He received a gastric tube several weeks later and Isaac, with little to no improvements in his condition and the added strain of life stemming from the management of g-tube feedings. Several months went by before the result of the whole-genome-sequencing which implicated the SLC16A2 gene, a gene that codes for the MCT8 channel. This lead to his diagnosis of MCT8 Deficiency or Allan-Herndon-Dudley Syndrome. More information on this disease is available on our website here, but for the purposes of our story, this diagnosis has led to severe cognitive delay coupled with muscle weakness and coordination issues. While treatments are in the process of being developed and tested, unfortunately for Isaac, the damage to his developing brain is considered theoretically irreversible and current medications have yet to provide normal functioning of his body. While we continued to work with traditional medical and therapeutic practice, we started to seek out additional, adjunct therapies to assist Isaac in his recovery journey.
One of the biggest issues for these children is muscle tightness which can ultimately lead to contractures. This condition is routinely treated with Botox® (onabotulinumtoxinA) injection to tight muscle groups and ultimately many children require baclofen pumps, which feed a continuous stream of muscle relaxant into the regions near the spinal cord. Hoping to avoid this eventuality as long as possible, Isaac's mom, Brianna, found the Galileo® vibration plate system. After obtaining a plate and applicable training, Isaac began to see improvement in his tightness. Overwhelmed with joy, Brianna and Isaac shared the device and his regimen with his physical therapists at the local children's hospital in San Diego, who immediately saw the potential benefits of such a device for children with other similar disease states. The hospital now has a plate of their own to allow broader access to the technology and techniques.
After expanding Isaac's therapies to include vibration therapy, neuromuscular stimulation, fascial release, acupressure, and chiropractic care, we began to see improvements in his performance at therapy and at home. Our goal is to bring some of these novel techniques and technologies to therapists and providers that can safely implement and study them in the treatment plans of other children (and adults) in the hopes that they will see similar improvements.
As in all things, there is no one-size-fits-all approach to treatment, and while Isaac has improved in some ways, he still has significant hurdles to face in the future. We will continue to seek out new ways to help him and others like him. By expanding the "toolbox" of practitioners, we hope to improve quality of life for families like ours.