“Fate whispers to the warrior, ‘you cannot withstand the storm’. The warrior whispered back ‘ I am the storm”
Colton is a resilient little boy who tackles an enormous amount of battles as he lives with CRELD1- a genetic mis-sense. CRELD1 is classified as an ultra rare genetic condition, and he is only 1 of 14 ever reported in genetic history around the world. Currently, he is the only person in the world with a dual diagnosis of creld1 and congenital myasthenia syndrome. He is our one in a billion boy.
Colton fights intractable epilepsy, CMS, adrenal insufficiency, restrictive lungs, G-J tube feeding dependent, submucosal cleft palate to name a few.
In his 2 years he has spent now roughly 300 days inpatient hospitalized from 3 days to 30 days at a time.
This has been our place to share updates on Colton’s journey, and get the pleasure of letting you into our world and to learn about and love our boy.
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.
