Found tion

Our sweet boy Devan is full of love and always ready to give hugs, kisses and high fives. Anyone that meets Devan is instantly drawn to him. 

 

For the first 6 months of his life, we didn’t think anything was amiss, but when Devan didn’t meet his 6-month milestone, then his 9th and 12th, doctors became concerned with his development. Being first time parents, we assumed he was just slow but regardless enrolled him in services through the ECI (Early Child Intervention) Program. As Devan grew, his poor muscle tone and his poor fine motor and gross motor skills became very concerning and we were referred to a hospital specialized in child development. Our visit there was followed by testing, MRIs and blood work. When all the results came back inconclusive, a genetic test was conducted and finally we had an answer! Our sweet boy Devan was diagnosed with Salla disease in March of 2018. His doctor had not heard of it and we were left to understand the disease and cope with this new reality. Thanks to social media, we were able to find other Salla families and made it to New York in September 2018 for the inaugural Salla Treatment and Research conference.

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We pray for advancements in science that can improve life for those with Salla, and of course for our own son.