Kobe is a 9 year old boy born with Oto-palato-digital syndrome Type I (OPD) and Pierre Robins Sequence.  This diagnosis comes with the following symptoms; trachelmalisa, trachelstenosis, bronchelmalsia, paten forum ovale and pulmonary stenosis of the left ventricle.  Kobe is completely dependant upon a tracheotomy tube for breathing.  He wears hearing aids in both ears due to severe loss of hearing.  Since birth Kobe has been hospitalized for the following surgeries; lower mandible jaw distraction, tracheotomy, nissenphundification, g-tube placement, two cleft palate repairs, tonsillectomy, numerous bronchoscopes and tube placement in ears and most recently bilateral lateral canthopexy s/p LeFort 3 craniofacial octotomei and separation and application of multifactor Lizeroff distraction (upper and mid-face jaw distraction). In addition, to surgeries Kobe has been hospitalized at least 10 times for respiratory distress, trachitosis and pneumonia.  

 

Kobe has an older brother of 14 and younger brother who is 4 years of age.  Kobe loves spider man, beef jerky, and of course his brothers.

 

We are grateful to be a part of the JAKESAKE foundation.

 

Kobe's Mom

April