@wonderfullifewithbedford: Rare Disease Day was created to raise awareness for rare diseases and improve access to treatment and medical representation for individuals and their families. Due to Bedford’s extreme rarity, approximately 150 cases have been reported in medical literature worldwide, making it challenging to navigate next steps (pun intended). Beddy is rare. I hope he sees that as a gift as he gets older, because we certainly do. Quite honestly, rare should really be what we aim for in life. Rare is strong. Rare isn’t easy. When someone wrongs us, it’s rare to forgive. When someone gossips to us, it’s rare to hold our tongue. When someone lashes out in anger, it’s rare to turn the other cheek. When someone frustrates us, it’s rare to respond well. When someone ignores us, it’s rare to assume the best in them. When someone walks away, it’s rare to keep trying. When someone gives us every reason to leave, it’s rare to stay. When something is challenging, it’s rare to keep trying. Yet, where would we be without those answering Christ’s call in our lives to be set apart? Happy Rare Disease Day to my beautiful baby boy. May we all remember that being RARE is strong. #raredisease #rarediseaseawareness #schwartzjampelsyndrome #schwartzjampel

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Friday 28 February 2025 20:11:41 GMT