Thank you for taking a moment to learn about our beautiful baby girl, Alexandra Nicole. A year ago, in April 2016, (15 months old) she was diagnosed with Pitt Hopkins Syndrome (PTHS), an extremely rare, neurodevelopmental disorder caused (in her case) by a micro-deletion of her TCF4 gene on her 18th chromosome. The news was devastating to say the least…there isn’t a moment that goes by that we don’t think about her and her diagnosis. There are less than 600 people (mostly kids) in the world diagnosed with this syndrome. There are less than 400 here in the United States…and only 4 diagnosed kids here in Arizona. Alexandra is one of them.
This site is dedicated to enlightening and educating the community on living with PTHS and to help support the efforts of the Pitt Hopkins Research Foundation (PHRF).
Please take some time to read Our Story to learn about our journey so far. You probably have never heard of Pitt Hopkins Syndrome, no worries, most doctors haven’t either. (Sigh…) But the good news is, you can find plenty of information regarding this rare syndrome (clinical characteristics, prevalence, and causes). We have assembled a renowned team of clinical doctors, therapists and specialists who work with Alexandra on a weekly basis. Our new normal is filled with researching the latest news in genetics and neurology, important doctors appointments, therapy sessions (play time!) and rigorous developmental evaluations.
Here is a little highlight reel of some of the magical milestones that Alexandra works so hard for each and every day.
For those that would like to learn how to make an immediate impact on the lives of our “Pitt kiddos,” please consider joining Alexandra’s Pitt Crew. It’s a cool club, we promise.
From the bottom of our hearts, thank you for visiting us today and we hope to hear from you soon.
The Anderson Family
In the months since we went public with Alexandra’s devastating diagnosis of Pitt Hopkins Syndrome, the response from our network of friends and family has been overwhelming — in the best way possible. As of May 1, 2017 an amazing $21,500 has been raised to go directly to finding a cure! Thank you! Our hearts are so happy!
Over 175 individuals have joined her Crew, will you join next? Your support gives our baby girl hope and it WILL make a difference. I promise. Thank you so much for heart-warming messages, virtual hugs, in –person hugs and donations…the entire Pitt Hopkins family thanks you.