Home     Event Details     About Ella     Photo Gallery     Event Supporters     Contact Us     Make a Donation

About Ella
YouTube Click to learn a little more about Ella, her syndrome, and her family

Ella was born September 1, 2010 to a family that absolutely adores her. She has two amazing older brothers Nathan and Matthew that love her to pieces and make her laugh and smile on a regular basis. Her parents cherish her and she is so lucky to have the best extended family that anyone could ever ask for.

When Ella was born, she had no significant complications.  However, in the hospital the doctors noticed some anomalies that individually were not a major concern, but the fact that there were several led them to suggest genetic testing. Initially nothing was identified, but after her first few months and some additional blood tests to look further into her chromosomes and genes, it was confirmed that she has a very rare genetic syndrome called Pitt Hopkins Syndrome (PTHS). She was now four months old and diagnosed with something that we have never heard of and something that the doctors did not even know much about. Information was limited as this syndrome is very rare and has only recently been diagnosed through specific genetic testing.

Since that time, Ella has been enrolled in Early Intervention and has been working with a Physical Therapist, Occupational Therapist, Special Education Teacher, Speech Pathologist and a number of other specialists on a regular basis. She is now 3 years old and has "graduated" from the Early Intervention program.  She now attends Mary Cariola Children's Center and goes daily to her new pre-school program.  And she loves it!

She is a happy little girl who has a loving and supportive family. We continue to work with Ella everyday.  As everyday passes, Ella is learning new skills and getting stronger in all areas.

We are so thankful to our teachers, therapists, family, and friends for their unyielding support!



Web site designed by Brian, Michele, Nate, Matt, and Ella Schilling - 2012