On 4/18/22 my sister and her husband received a call from the geneticist that turned their world upside down. Their sweet 6 y/o daughter had been diagnosed with a rare genetic disorder that affects the brain and nervous system. Batten Disease (subtype CLN5) is a terminal disease that typically begins in childhood and currently has no cure. There are only 100 documented cases of CLN5 worldwide. Ryan is truly a unicorn. She will require additional imaging, medications, dr appointments with multiple specialists and medical equipment including walkers, wheelchairs and amobility vehicle. Please help us ensure that Ryan is able to receive the help she needs to maintain her quality of life the best we can. Additional information about Batten Disease can be found at www.livingbatten.com or https://beyondbatten.org.