My name is Annette and my 18 month old daughter Ashley had her trach put in March 5, 2004. She was born with a very rare genetic condition called Pfeiffer syndrome type 2 which includes cloverleaf skull, protruding eyes, sunken-in mid face, sleeve trachea, hearing loss, hign arched palate, fixed elbows and broad thumbs. Ash also has a g-tube, hydrocephalus, chiari malformation, GERD, and developmental delay. She has gone thru 7 surgeries so far and will have many more in her lifetime to reconstruct her face and skull. Her trach will be in until she is 4 or 5.
Ashley is the sweetest little girl out there. All I need to see is her beautiful smile and it just brightens my whole day. Ashley truly is a fighter and I cherish each and every day with her.
Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.