Mina was diagnosed right after birth with Crouzon syndrome.  Her head was very small, all sutures were closed accept the fontanel. She couldn’t breathe or swallow and had Choanal atresia (Choanal atresia is a congenital disorder in which the nasal choanae, are occluded by soft tissue, bone, or a combination of both, due to failed recanalization of the nasal fossae during fetal development).

She spend the first 7 months in the hospital on Cpap and GTube, because she was misdiagnosed and not treated properly. Her breathing problems was do to her Chiari malformation which was eventually addressed as I moved with her from Spain to Germany and the Neurosurgeons saved her life.

She’s had so far 3 cranio expansions, 2 VP shunt replacements and 3 Chiari decompressions. On top of her head, she had several ENT procedures, GI, severe lunginfections do to her venting problem. Last summer she got a Trach because her obstructive apnea and her daily exhaustion by mouth breathing put her entire development on hold. Despite all this, Mina is the most joyful extroverted child. She loves everyone and has an enormous willpower. She is very adventurous and very smart, there is nothing that could ever stop her.