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Ryker - Reach for the Stars
Starting Bid : $50.00 USD
Reserve price has not been met by any bid.
Reach for the Stars
Program: CACNA1A
Ryker’s Story:
At 4 months old, Ryker had his first major neurological event. This was his first of many more to come. When he arrived at the children’s hospital, they immediately called code blue, and his parents knew things would never be the same.
During that initial stay at the children’s hospital, Ryker had an array of testing that would all come back normal. There were no answers as to why he was having status seizures until his epilepsy genetic panel came back. At 7 months old, he received his diagnosis of a “likely pathogenic” variant in his CACNA1A gene. Only two other individuals were diagnosed with his variant at the time. There was virtually nothing known about them or any available treatments.
Four years later in January 2021, Ryker had another life altering event and was diagnosed with severe hemiplegic migraines (HM) with brain swelling, another very rare diagnosis. His parents were so grateful that a neurologist familiar with HM was on rotation during Ryker’s stay and recognized what it was. Ryker began receiving emergency treatment for this event and was finally on a path to a slow recovery.
Over the years, many treatments were trialed. More than 10 different anti-epilepsy drugs, some off label medications, the medical ketogenic diet, and a Vagus Nerve Stimulation implant. Ryker’s CACNA1A diagnosis also comes with autism, tremor, and he suffers from debilitating ataxia that affects his balance and ability to walk independently. There are no effective treatments, and his parents focus on quality of life.
Despite all of these significant hurdles, Ryker remains a happy little boy beaming with the best smiles! He has a wonderful sense of humor with a hearty and infectious laugh. His fortitude and strength are equally matched by his resilience and ability to persevere. His love language is music that motivates nearly every aspect of his life (especially useful during therapies). He gives the most memorable deep pressure hugs. Even though he is non-verbal, Ryker has a unique ability to connect those around him and surely leaves a lasting impression.
Ryker is a gift, and his family is deeply thankful to n-Lorem for giving him a solid shot at a good, healthy life.
