Ethan Rosenberg Little American with SPG47 Country: USA

A Biography of Ethan Rosenberg

Introduction
Ethan Rosenberg is a young American boy who has been diagnosed with an "ultra-rare" brain disorder known as spastic paraplegia 47 (SPG47). This neurodegenerative condition affects the proper formation of the brain, resulting in Ethan's inability to speak and serious difficulties in motor development. Ethan and his family are currently focused on raising funds to finance research and find treatment methods for SPG47.

Early Life and Diagnosis
Ethan Rosenberg was diagnosed with SPG47, a rare genetic disorder, at the age of three. He became the only known patient in his state of Texas and the sixth in the entire United States to have this debilitating condition. Ethan's parents, Sachin and Matthew Rosenberg, have been desperately searching for ways to help their son since the diagnosis.

Impact of SPG47
SPG47 is characterized by severe and progressive spasticity and muscle weakness, particularly in the lower limbs, which limits motor and speech development. Without specialized assistance, Ethan is predicted to lose his ability to walk by the age of ten. His parents noticed delays in his milestones from as early as two months old, and at ten months, he experienced breathing difficulties that led to multiple emergency room visits. MRI scans revealed brain hemorrhage and other injuries, eventually leading to microcephaly.

Journey to Treatment
When Ethan turned 22 months old, his parents were informed that he was autistic, and doctors began speech and physical therapy. However, Ethan still did not walk or talk when he turned two, prompting his parents to seek help from the Columbia University Medical Center. It was there that DNA samples from both parents were obtained, leading to the diagnosis of SPG47 in December 2016.

Current Situation and Fundraising
Since the diagnosis, Ethan has made progress and learned to walk through a comprehensive therapy program initiated in 2016. However, he has not yet developed speech. His parents are currently participating in the activities of the non-profit organization "Cure SPG47" to raise funds for research and treatment. They hope to find medications that will prevent the progression of brain dysfunction and allow Ethan to maintain his acquired skills.

Hope for the Future
Ethan's parents remain hopeful that he will continue to make progress and preserve his abilities. They are eager to witness him run, climb trees, and learn to speak. They are also hopeful that the medical community will find a cure for SPG47, as it is still a relatively new disorder with uncertain life expectancies and limited treatments available. Ethan is scheduled to begin equine therapy in January 2017 to improve his coordination.

Conclusion
Ethan Rosenberg's journey with SPG47 highlights the challenges faced by individuals with this extremely rare genetic disorder, which resembles cerebral palsy in its symptoms. Despite the obstacles, Ethan's family remains determined to raise awareness and funds for research, hoping to find a treatment that will halt the progression of this degenerative condition.