Hi, we are the Hardy Family from Oak Creek, Wisconsin! We have 3 sweet boys: Deacon (11), Rhett (9), and Brooks (4).

When Brooks was about 3 months old we started noticing delays with his developmental milestones, and at 6 months old, his pediatrician referred us to a physical therapist because of his torticollis causing one side of his head to be flat. Shortly after he started PT, he got a cranial band to help correct this. When he continued missing milestones, we were referred to neurology and genetic counseling, while also adding in speech and occupational therapy services. After 2 rounds of genetic testing, Brooks was diagnosed with Pitt Hopkins Syndrome (PTHS) in May of 2023. Pitt Hopkins Syndrome is a rare genetic disorder affecting a specific gene in chromosome 18 called TCF4 and is characterized by developmental delay, possibility of seizures/epilepsy, severe gastrointestinal issues, lack of speech, and mobility issues. Although getting this diagnosis was difficult, we felt a sense of hope now that we had some direction and resources moving forward. We know the road ahead of Brooks will not be an easy one, but with his amazing team alongside him the sky’s the limit!

Brooks is a happy and energetic boy who can light up any room! He has the sweetest smile, the most beautiful eyelashes, and the most infectious giggles! He has a love for food, school, splashing in the water, swinging and spinning, tickles, music, books, watching sports (especially his favorite, the Indiana Fever!), traveling, his brothers, playing with friends, Mickey Mouse, watching Hey Duggee, learning new things and being sassy and silly!

This past year, he attended 4K four times a week for two and a half hours a day. He LOVED learning with his friends and teachers, and is ready for the big transition to kindergarten in the fall! He has grown SO much over this past year and continues to amaze us with all of his progress every single day!

He loves crawling to explore and continues to work hard on pulling up to stand, side stepping and cruising along furniture, walking in his gait trainer with minimal supports, strengthening his core, using his eye gaze communication device to express his wants/needs by making intentional choices, and improving his fine motor skills. Music Therapy has also been added into Brooks’ weekly routine, and he is beyond excited whenever he sees Mr. Josh! They work on so many different skills during their sessions together!

Brooks has taught us so much about patience, compassion and inclusion—changing our outlook on life for the better. We are so incredibly proud of him and the way he takes on new challenges with determination!

In honor of Brooks and individuals with Pitt Hopkins Syndrome, we are trying to raise as much money as possible to be donated to the Pitt Hopkins Research Foundation. This will help scientists continue to advance their mission of finding a cure for this rare disorder and similar ones!

Please become an integral part of “Team Brooks” by:

1. Donating: to Brook’s “giving page” by clicking the DONATE button below.

2. Ordering: a loaf of homemade bread at: Team Brooks Bread Order

3. Purchasing: a “Team Brooks” Pitt Hopkins Awareness shirt at: Team Brooks Shirts

*We will also be having our annual Lemonade/Baked Goods Stand in late August again this year! Keep your eye out for the date and time! *

Thank you for your support!

-Gina, JJ, Deacon, Rhett & Brooks Hardy