On January 13, 2004,  Bari was born with “facial dysmorphic features” and choanal atresia (an airway blockage). She was in NICU for approximately 1 month and came home with a pulse oxymeter. She has had 2 surgeries to repair the blockage.  She was diagnosed with a hearing impairment in April 2005.

On May 10, 2005, Hannah was born. She was immediately diagnosed with a moderate-severe form of Treacher Collins Syndrome. At that time, Bruce and Bari were diagnosed with milder forms of Treacher Collins Syndrome. Treacher Collins Syndrome is a condition of facial difference characterized by an underdevelopment of the bones and soft tissue of the head and face.

Hannah was in NICU for approximately 3 months and came home following several surgeries including the placement of a gastrostomy tube and a jaw distraction.  The doctors at the IRPS were able to avoid a tracheotomy by performing the jaw distraction when she was just a few weeks old. Hannah has had approximately 15 procedures done and is expected to have many more.

Now, Bari is 6 years old and is a typical child getting ready for 1st grade. Hannah is 5.  She will be graduating from preschool at the Cleary School for the Deaf, and will be going to be in a mainstream class for kindergarten in our school district.  With her BAHA (bone anchored hearing aid), her hearing is quite good.  She still uses the g-tube for all of her nutrition, but hopefully she will be able to get rid of it.

Thanks to the NFFR, we’ve been able to meet other people with facial differences. We’ve had 2 fundraisers at our car wash to help the NFFR and the IRPS help children that do not have the same advantages as we do.  We ask our family and friends to support the mission of the NFFR by making donations in the girls’ name.

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