Hello to all JBS Bloggers. Jimmy is 21, and has come a long way with JBS. We are entering uncharted territory here with adulthood, but we'll make it through somehow. I'd love to hear from all of you with our kids, so I will check this frequently.
We will form our family of JBS kids!
Johanson-Blizzard Syndrome (JBS) is an extremely rare inherited disorder characterized by an unusually small nose that appears "beak shaped" due to absence (aplasia) or underdevelopment (hypoplasia) of the nostrils (nasal alae); abnormally small, malformed primary (deciduous) teeth and misshapen or absent secondary (permanent) teeth; and/or unusually sparse, dry, coarse scalp hair that tends to have a distinctive "upsweep" in the forehead area.
jueves, abril 16, 2009
lunes, abril 13, 2009
Una pequeña familia Internacional
Montse, espero que Lucas esté creciendo y que esté estable de salud, te mando un abrazo en la distancia. Igual para ti Mary, que eres una tía muy atenta a la salud de Elio. Espero poder volver a contactarlas. Dios les bendiga y les cuide a todos.
domingo, abril 12, 2009
Llegó la adolescencia, que alguien me ayude!!! Adolescence is here, somebody help me!!!
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