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Methylmalonic Acidemia, Cbl C, Age 6

Methylmalonic Acidemia caused by Cobalamin C deficiency….Before our daughter Cameron was born we had never even heard about this organic acid disorder. From the onset this term changed our lives. Our daughter Cameron was diagnosed 2 weeks after birth and it changed the perception of how we will maneuver on a day to day basis.  We had to modify the way we would be teaching and learning our daughter. It was hard to understand the what was happening so the first thing we did was educate ourselves as best we could, since there is not a lot of information out there about the condition as it has just recently been screened. Once we learned what there was to know about the deficiency we also taught ourselves that all children are different so we can’t compare on what will or will not happen. Adjusting to this mode of thinking allowed us to learn that she will learn and comprehend things at her own pace. Cameron’s vision is most notably her largest obstacle at the moment, she struggles to see things and we are teaching on how to live a “normal” life with her impediment. It is tough to see your child struggle and don’t want them to hurt or suffer but as a parent you try to educate them and prepare them as much as possible. It is okay to go through many stages of emotion…its ok!! Just realize that once you understand what needs to be done it does get easier. You become stronger and your child follows and does the same. We are proud of our princess for constantly overcoming obstacles. We will continue to be here for her and for this ride as we spread love, kindness & awareness to all rare warriors.

Thank you,

Sarah (Cam’s Mom)

i.see.you.cam (Instagram)

From Winter 2023 Newsletter

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