My Gorgeous niece and Scotts daughter Darcey was diagnosed with Pitt Hopkins Syndrome in 2019. 

Pitt Hopkins Syndrome is a rare genetic disorder resulting from a mutation of the TCF4 gene or a deletion in the region of the 18th chromosome where the TCF4 gene is located. Some symptoms include poor temperature control, breathing abnormalities, a very high pain thresh hold which I'm guessing is why she tends to bite/hit herself a lot and purposely trap her hands or feet in doors etc just to feel it. Also her speech and language is extremely lagging, children with Pitt Hopkins often understand more than they can express.

We are raising money to help fund research and awareness into this very rare condition in her name.