Medical Resources for Emma

Emma was born on July 2, 2018 with a rare condition called Apert Syndrome. Apert Syndrome effects 1 in every 65,000-88,000 births per year.  Apert Syndrome cause the fusion of the fingers and the toes which is called syndactyly. Apert also cause craniosynostosis which is when the skull fused together too soon and then have to be surgically separated and moved so that the brain has room to grow. Apert also causes midface hypoplasia which can cause some children to need a tracheotomy in order to breathe. 
 Emma is fed through a feeding tube due to a cleft palette and not being able to breathe, suck, and swallow at the same time. She also has a tracheotomy in order to breathe due to her nostrils being so small that she doesn’t get enough air. She has a VP shunt due to hydrocephalus. She has had to have multiple emergency surgeries to revise the shunt due to having slit ventricle syndrome which causes the ventricle in the brain to collapse on the shunt catheter. 
 Emma’s neurosurgeon has been kind enough to offer his amazing singing voice by having a benefit concert on October 17th to assist us in recovering some of the savings that we have lost over the past 14 months due to multiple hospital stays, hotel stays, fuel for travel back and forth to Lubbock, and food expenses. It would be great for those local to join us on this special evening. Every little thing helps. Thank you so much ☺️