Edith, daughter of Lance and Heather Sherman, is a sassy, spunky, energetic, and very happy little 4 year old. She was born July 3, 2013 normal and healthy, or so we thought. At about 3 months old, we found out Edith had torticollis and had to start physical therapy. She did great and seemed to be recovering quickly, but other things were showing up as we continued PT. She wasn’t hitting her milestones and getting farther and farther behind the other kids her age. Finally at about 1 years old, we knew we need to figure out what was going on. We went to Children’s Hospital in St. Paul to see a neurologist and then a geneticist. There were lots of blood tests, x-rays, and MRI’s done, but no answers. It was good news, but we still knew there was something going on. Finally December 2015, Edith’s geneticist said we needed to try this in-depth genetics test. All three of us had blood taken and we were told that there was only a 25-30% chance that we would get a diagnosis. Well, March 17, 2016 we received a phone call that they had a diagnosis for Edith. She has Pitt- Hopkins Syndrome. We were unsure of what that meant for Edith, but we had a diagnosis, which meant we would have a better idea of what was to come in her future and how to better take care of her. We met with her geneticist, who told us more information on her diagnosis.

The day to day motions that you or I do that seem so simple, is hard for Edith. She has to work for everything. She attends preschool at St. Michael Elementary 4 days a week and receives PT, OT, and Speech during that time, and does outside PT, OT, and Speech, each one day a week. She’s busy and works hard. She has come a long way, but still has a long way to go. I have no doubt in my mind that she will conquer her milestones. She is a fighter. But for us, it is extremely important to support the Pitt-Hopkins Research Foundation. They are doing several studies, hoping to find something that will help our kids.

Where did we get the name Edith’s Lost Boys?

We found out there is a Peter Pan connection to Pitt Hopkins Syndrome. Supposedly, Peter Pan is based off a real life boy, who they believe had Pitt Hopkins Syndrome. As the fairy tale is written, Peter Pan has a clan of Lost Boys, who follow him. After we found out about Edith’s diagnosis, she had a following of supporters, family and friends. So after we found the story, we found it fitting to name her supporter’s “Edith’s Lost Boys”.

Edith’s Lost Boys WOD 

Teams of 3
228 Cal AAB
250 Pull ups
250 Burpees
250 Thrusters
250 Sit ups
250 KB swings
250 Push ups
250 Wall Balls

=1978, the year in which PTHS was first described in an article in the Australian Pediatric Journal by D. Pitt and I. Hopkins.

This WOD will be done at EffectUs Athletics (13060 43rd ST NE, Saint Michael, MN) on Saturday, September 16 starting at 8:30am. JOIN US!

There will aslo be a Kids workout!

 To register, donate, or for more info, visit: https://myevent.com/edithslostboys

A minimum $30 donation must be made in order to receive a t-shirt.