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 is 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!), his brothers, Mickey Mouse, learning new things and being sassy and silly!

This past year, he started school by attending 3K twice a week. He LOVED learning with his friends and teachers and he is so excited to begin 4K this 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 is working 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.

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, 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: https://form.jotform.com/hardyjames12/team-brooks-banana-bread-order-form
3. Purchasing PItt Hopkins Awareness Day Apparel: https://www.jeannekay.com/pitt-hopkins

Thank you for your support!

With love and gratitude,

JJ, Gina, Deacon, Rhett, and Brooks