Hi! My son Jimmy has JBS. He is now 19 years old. It was quite a shock when we got the diagnosis. He's on the mild side of the syndrome, with the malabsorbtion, hypothyroid, and small stature. His muscle tone was very low when he was young, but now he competes in track and field events for Special Olympics, usually placing first or second in the 100 meter dash! He is also a biker, enjoys the trampoline, and video games and movies.
He is mildly mentally challenged, but is in a job training program through his school, working in the bakery section of a supermarket. He will graduate from high school this next year, and move into a transition program at a local college.
He had all of his teeth removed last November, to get ready for dental implants. He still had his baby teeth since there were no permanent teeth to replace them. He had the lower teeth implanted in July, and will have the uppers done after the new year.
Thank you to Cynthia for creating this blog, and allowing me to find families with children with JBS. It's always good to have a support system. I hope to find families in the US to communicate with as well.
I'll send some pictures of Jimmy in my next post.
Take Care!
------------------He is mildly mentally challenged, but is in a job training program through his school, working in the bakery section of a supermarket. He will graduate from high school this next year, and move into a transition program at a local college.
He had all of his teeth removed last November, to get ready for dental implants. He still had his baby teeth since there were no permanent teeth to replace them. He had the lower teeth implanted in July, and will have the uppers done after the new year.
Thank you to Cynthia for creating this blog, and allowing me to find families with children with JBS. It's always good to have a support system. I hope to find families in the US to communicate with as well.
I'll send some pictures of Jimmy in my next post.
Take Care!
Hola, mi hijo Jimmy tiene el Síndrome de Johanson-Blizzard JBS. Ahora tiene 19 años. Fue un choque cuando obtuvimos el diagnóstico. El está en el lado benigno del síndrome, con malabsorción, hipotiroidismo y estatura corta. Su tono muscular era muy bajo cuando estaba pequeño, pero ahora el compite en eventos de pista y campo para las Olimpiadas Especiales, usualmente llegando en primer o segundo lugar en carreras de 100 metros!! También es ciclista, disfruta el trampolín, video juegos y películas.
Él es de atención mental moderada, pero está en un programa de entrenamiento de trabajo de su escuela, trabajando en la sección de panadería de un supermercado. Se graduará de preparatoria el próximo año y se moverá a un programa de transición en un colegio local.
Se le removieron todos sus dientes en noviembre pasado, de tal forma que estuviera listo para su implante de dientes. Jimmy todavía tiene sus dientes de leche pues no tuvo dientes permanentes que los reemplazaran. Tuvo su primer implante de dientes inferiores en Julio, y tendrá su segundo implante de dientes superiores después del año nuevo.
Gracias a Cynthia por crear este blog, y darme este espacio para encontrar familias con niños con Johanson-Blizzard. Siempre es bueno tener un sistema de soporte. Espero encontrar familias en los Estados Unidos y poder comunicarnos.
Les enviaré fotos de Jimmy en mi próxima nota.
Cuídense!
