Ryder Cash Hauer was born on September 5, 2009. Immediately, his parents and family fell in love with this handsome 9 pounder! He entered the world without a peep, but was content to observe his surroundings. Doctors and nurses rushed to check him out and were bewildered that he wouldn't make any noise or protest to their poking and prodding. Thankfully though, other than slight jaundice, he seemed to be in good health and was just a "quiet baby with nothing to say!" Life with this precious addition and their two older sons was a chaotic bliss for the first 11 months. And then his family's bliss was trampled with the news that Ryder's MRI was abnormal and he might have Leukodystrophy. The day they heard this news (over the phone) was the beginning of the whirl-wind life that they'd shortly become accustomed to. His mom quit her teaching job to be a full time care giver and advocate of Ryder.
They went to numerous doctor's appointments, had 5 hours of therapy per week, countless labs and outpatient procedures, dozens of hospitalizations all while attempting to maintain a happy "normal" life for all 3 of their children. For almost 2 years their life was a rollercoaster ride and they held on tight. They searched high and low for answers to their son's ailments. They finally did get answers 12 days before Ryder passed away. He had Alpers Syndrome, a rare, devastating disease that slowly affected his GI tract, vision, ability to swallow, his developmental abilities, energy and eventually took his life. Ryder passed away 2 weeks shy of his 3rd birthday. In his (almost) 3 years on Earth, he was the most delightful little guy to be around! Besides being absolutely cute, he had the best smile, endlessly long eyelashes and a sweet disposition. He loved to snuggle and usually was a happy little guy! He was mellow, content and enjoyed hanging out with his brothers. He loved being outdoors swinging, going down the slide or riding his big wheel bike. He LOVED baseball too. He sure knew how to melt hearts and taught many people how to live in the moment and appreciate life!
Unfortunately, rare conditions aren't that rare and occur in 1 of every 150 births. Despite medical advances, diagnosing rare cases remains difficult, cost prohibitive, and - if confirmed at all- can take years. TGen stands to change that. To learn more about TGen's Center for Rare Childhood Disorders research program, please click here.
The family faced many road blocks while trying to help their son and unlock the mystery diagnosis. Ryder's insurance did not cover many important tests. These tests included a chromosome microanalysis to look for small deletions or duplications of his chromosomal material. The insurance company felt that if Ryder got these tests it wouldn't change the outcome for him. As a mother of a suffering child with an unknown condition and after working with children with autism for over 12 years, her view was different. When she started working with kids affected by autism, 1 in 10,000 kids were diagnosed. Now it is 1 in 110 and most people are aware of autism. What if people said autism or cancer couldn't be cured so why bother with a diagnosis? Well, how can we research and find treatments for what we don't know or understand? The Hauer family wants leukodystrophies and mitochondrial diseases to be understood and fought, along with the numerous other rare disorders that exist. TGen gave the Hauer family answers, comfort and an end to the 2 year battle against the unknown.
Through the Ryder Hauer Fund for Rare Childhood Disorders the Hauer family will support others in their life's journey and hope to help them find peace and answers too. Click the donate button located on this page to make a donation to this fund.
