Darai'ja (heart of an angel) Pitt-Hopkin's Syndrome

5 year old Darai'ja Hill, is a sweet and loving, happy little girl who never cease to amaze us all with her inner strength and determination to experience life like most 5 year olds do. Darai'ja was diagnosed with the rare disease of Pitt-Hopkin's Syndrome (PTHS) at the age of 15 months, and is said be the first African-American child ever to be diagnosed. Darai'ja's doctors' prognosis of Darai'ja's quality of life expectancy is that of a vegetable, and she was to never walk or talk. Yet, here she is at the age of 5 walking with stability and has minimal speech, saying a few words like mom, dad, papa, and gran gran(grandmother). Pitt Hopkins Syndrome (PTHS) is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. PTHS is characterized by intellectual disability and developmental delay which range from moderate to severe, possible breathing problems of episodic hyperventilation and/or breath-holding while awake (55%-60%), recurrent seizures/epilepsy (40%-50%), gastrointestinal issues, and distinctive facial features. Most children affected by Pitt Hopkins cannot talk and some are confined to wheelchairs, dependent on others for everything. Many also suffer from seizures, hyperventilation, visual impairment, sensory issues and various gastrointestinal difficulties.(http://pitthopkins.org/what%20is%20pitt%20hopkins%20syndrome/) Darai'ja is the only child to single mother Denayia Hill, a loving, strong mother who have made many sacrifices to ensure Darai'ja has a healthy and safe lifestyle and have overcome great odds of 1. Lack of childcare due to daycares not wanting to accept Darai'ja because of their inability to give sufficient care based on her exceptional needs. 2. Lack of income due to not being able to maintain steady work without having childcare for Darai'ja. 3. Lack of resources and community involvement to help Denayia obtain the necessities to get Darai'ja the therapy, homecare, and access to extra curriculum activities that will allow Darai'ja a chance at a normal life because of Denayia's lack of income that is needed in order for her to pay for Darai'ja's necessities. to provided Darai'ja with a stable and loving home, but wants so much to give Darai'ja a fair opportunity at a normal life ( as any mother would if it was their own).