10/17/2021

"My name was on all the signs at the parade! Why am I so famous?” This was Avery’s reaction to Parade 2 Uplift, a special day when CC4C friends throw personalized car parades for each Champion Child!

 

Avery had a flare-up of his condition the week before the Parade and had to miss 4 days of school. He was feeling a little better by parade day and showed up to find lots of signs with his name (including on the Jumbotron!) and his high school team. They presented him with a GIANT teddy bear (which he now sleeps with every night). It was a great day to celebrate Avery!

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8/22/2021

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Avery experienced monthly fevers during infancy. During these times, his joints and lymph nodes would swell and rashes would appear. After genetic testing, the family discovered that Avery has 2 mutated genes associated with Familial Mediterranean Fever Syndrome (FMF) - but is asymptomatic of FMF's "normal" symptoms. This led to a diagnosis of Monogenic Autoinflammatory Disorder.

 

Additionally, Avery has an aortic and mitral valve insuffiency, caused by faulty connective tissue associated with Hypermobile Ehlers Danlos. Avery has suffered through his conditions since infancy and has seen numerous specialists to help keep him comfortable and without pain.

 

Avery is a bright young boy who loves science, math, and Minecraft. He also loves to golf and throw the football around. He is shy at first, but warms up fast!