Bedford is a 2-year-old boy with Schwartz-Jampel syndrome who never gives up. He wants to sometimes. He cries sometimes. But. He. Never. Stops. Repetition builds confidence, endurance, and strength. Bedford’s mom works with him daily to improve his motor skills, encouraging him to keep putting in that effort.
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The rare condition of Schwartz-Jampel syndrome causes muscle stiffness (Myotonia) and bone abnormalities (chondrodysplasia). The syndrome appears in early childhood and typically worsens throughout life. Specific features can manifest differently and may vary widely from person to person, as with any long-term musculoskeletal problems.
Schwartz-Jampel syndrome type 1 might be evident during infancy and early childhood. Schwartz-Jampel syndrome type 2 is rarer and is congenital, or recognized at birth. Recent research has led doctors to re-identify type 2 as Stuve-Wiedemann syndrome. Medical practitioners are in the process of discontinuing the type 2 diagnosis in favor of the more correct SWS diagnosis.
Schwartz-Jampel Syndrome Will Not Stop Bedford
Unlike many childhood medical conditions, Schwartz-Jampel syndrome doesn’t shorten longevity. With physical therapy and his drive and passion for life, Bedford can lead a long and productive life. He faces many more hurdles than most kids, but he is already showing perseverance.
Bedford has a special walker, so, even with his limitations, he can play and participate with other children. He’s a little slower, but manages to keep up and have fun with his older brother. Inclusive parks broaden his ability to play like any other kid.
His mom has a support system in place, providing backup for the long days. She is Bedford’s biggest cheerleader, and she pushes him to keep trying. With her encouragement and help, there isn’t much that this child cannot do.
If you are interested in following Bedford’s progress, follow Wonderfullifewithbedford on TikTok. His mom shares trials, triumphs, milestones, and struggles. And a lot of smiles, because Bedford is a little smile machine! They are selling shirts with the message, “Meet you at the curb,” to raise money for an all-inclusive playground. Curbs are still tricky for Bedford, but he keeps practicing and is gaining confidence.
We could all learn a lesson or two from Bedford!
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