Meet Team Wally
Enter #teamwally — the force of family and friends behind Wally Schutz. With help from the National Fragile X Foundation, we read everything we could, signed up for newsletters, and watched webinars. We got as smart as we could as fast as we could. With only one month before the new school year, there were lots of loose ends that needed to be tied up to make sure Wally would get the services and care he needed. #teamwally sprang into action and within six weeks we were able to get Wally assessed and placed into the Medford Early Education Program (MEEP), enrolled in transportation from MEEP to a new daycare, and get both Winnie and Wally situated in said daycare that would care for Wally for half the day; all while we had our full-time jobs.
We did it! Wally got carried upside down to his classroom over his father’s shoulders kicking his shoes off for several mornings, he rode from school alone strapped into a van, and was greeted by his little sister and new daycare provider for the afternoon. He did it! (Note, it helped to have an Apple air tag in his backpack and his favorite “lovey”).
This past February with the help of Fragilex.org, Zynerba, and Boston Children’s Hospital, we enrolled Wally in an experimental cannabidiol (CBD) topical treatment trial for kids 3-21 years old living with the Fragile X genetic mutation. Wally started in the blind portion of the trial, and as Wally would put it …. “WOW”! As of June 2023, he has transitioned to open-label where he continues to get the CBD treatment twice a day. We are most thankful that his 3:30 a.m. wake-ups have been pushed to 6 a.m. and the quality of life for the whole family has improved.
Continuing this school year with his Early Education Program, additional weekly speech therapy with Ms. Leeann at Children’s Speech and Hearing Specialists, and the CBD treatment, Wally’s vocabulary skyrocketed this summer; Ms. Leeann tracked an average of five utterances in a 45-minute session when she first started to work with Wally. This October he is averaging 25 and that number continues to grow each week. Since starting back to school in September, his teachers and therapists at MEEP can’t stop commenting on Wally’s developmental leaps and rumor has it he was the star of picture day (compared to last year when his photo was snapped as he was running out of the frame).