Hi, we are the Hardy Family from Oak Creek, Wisconsin! We have 3 sweet boys: Deacon (10), Rhett (7), and Brooks (3).

When Brooks was about 3 months old we started noticing delays with his developmental milestones, but at that point we still weren’t super concerned. 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. PTHS is characterized by developmental delay, possible breathing problems of episodic hyperventilation and/or breath-holding while awake, recurrent seizures/epilepsy, 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, splashing, tickles, music, his brothers, Mickey Mouse, learning new things and being sassy and silly! He has grown SO much over this past year and continues to amaze us with all of his progress every single day! His biggest accomplishment this year was mastering crawling and he loves the independence this has given him! He has also gained so much core strength, made big improvements with weight shifting while standing and side stepping, started using his eye gaze communication device to make intentional choices, became more vocal with expressing his feelings and wants/needs, continued to work on adding new foods to his diet and practice self feeding, started isolating his index finger to point and press buttons, and continues to have less and less support while walking in his gait trainer. We know that any time now he will be taking off in it independently and won’t look back! The newest skill he has been working on is climbing, and he is already making quick strides with that! He recently got his wheelchair and is loving it! His wheelchair and his gait trainer will both go to 3K with him in the fall. We are so excited for him to start school and make new friends! 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 Pitt Hopkins awareness Day on September 18th, we are trying to raise as much money as possible to be donated to the Pitt Hopkins Research Foundation. This will help scientists advance their mission of finding a cure for this rare disorder and similar ones! We also have a “Team Brooks” t-shirt collection with many different styles and colors! We have added long sleeves, hoodies and a zip-up option to the collection this year as well. These shirts are all designed by Rareitees, run by a fellow Pitt Hopkins Mom spreading awareness for PTHS. When you order a shirt from Rareitees, all of the money aside from the cost of the actual t-shirt goes directly to the Pitt Hopkins Research Foundation.

Please become an integral part of “Team Brooks” by donating, purchasing a t-shirt, or both! Thank you for your support!

With love and gratitude,

JJ, Gina, Deacon, Rhett, and Brooks