For further reading on our family’s journey

This is an article that appeared in the Goshen News on September 18, 2013 that was written about our family’s journey with Sarah:
Beyond the Face

Here is our family Facebook page for recent updates and networking.

Helpful websites related to craniofacial conditions

Here is a non-profit organization called Children’s Craniofacial Association which assisted us with travel expenses for Sarah’s CVR surgery; they also sent a care package for both Sarah and Felicity.  Please support them in any way you can!

Here is Riley Hospital’s Craniofacial Department Website. They have been absolutely superb in assisting us and in Sarah’s treatment, care and follow-ups. We intend to support them further and hope you will, too!

We recently heard about a non-profit organization called Heads Up!!!, which is located in southern Indiana and directly serves Riley Hospital’s Craniofacial Department as a fundraiser for them. Check them out.

This is an organization that actually fully funds surgeries for those with craniofacial anomalies, depending upon qualifications. They are called Fresh Start, so please check it out and refer someone you know who may be eligible and benefit from their charity.

Zofran Legal aims to reach as many people as possible who are seeking information relating to craniofacial conditions and provide education and quick access
to further information on the topic.

Other blogs by Apert moms

Meet Beth Hersom, mom of Sarah (another Sarah!) who was born with Apert Syndrome.  Hersom blogs here about her life and journey, but she also posts poignant and cathartic blogs about navigating the depression and overwhelming grief that grips all of us who are caregivers in the midst of crisis.  Hersom is warm and her writing very approachable.
Taryn Skees is a stay-at-home mom to four beautiful boys.  Her second oldest, Aiden, was born with Apert Syndrome.  Taryn is a cheerful, amicable, and approachable blogger whose style is a conglomerate of fresh, contemporary writing about the joys and challenges of parenthood.  Skees is one of the first Apert moms I approached after Sarah was born, and she is an incredibly helpful and compassionate person.  She also started the non-profit Apert O.W.L., which is a resource for families and kids who have Apert Syndrome.  She blogs here.
Mary Donatelli is a west coast mom to Bennett, a toddler who was born with Apert Syndrome.  Her blog is fun, fresh, and friendly.  She writes mostly about their family’s journey with Bennett (whose nickname is “B”) in detail that will be helpful to new Apert families.  She blogs here.