Dream Bedroom

Pitt Hopkins Symdrome

This tiny diva is Harper Grace. Harper’s gorgeous smile and contagious laugh can truly light up a room. Although she isn’t able to communicate verbally, it's amazing how much she can tell us with just a look. Just by being around her, you can tell that she may be tiny, but she has a big heart and big purpose. After a fairly uneventful twin pregnancy, Harper and her brother Nolan were born on May 31, 2013. At around a year of age, while her brother was meeting his milestones, Harper was falling further and further behind. After going through several rounds of tests, a neurologist diagnosed Harper with Pitt Hopkins Syndrome (PTHS), which is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. There are roughly only 700 diagnosed cases worldwide. PTHS is characterized by extreme developmental delay, gastrointestinal issues and a lack of speech. Harper is five and is striving to achieve developmental milestones. Because of her developmental delays and motor planning issues, she is nonverbal but uses a communication device to communicate. Harper is also striving to learn to walk. She participates in speech, occupational, physical and hippotherapy where she is learning to accomplish independent movement and is using an augmentative communication device to express her needs and thoughts. Harper has little body awareness and doesn’t have the necessary protective instincts to help keep herself safe when she’s playing and sleeping. Harper, along with her twin brother, has a 2-year old little sister, Mia. Harper is in special needs pre-K at Whitlow Elementary and loves school and seeing her friends and teachers. She’s a very social little girl, who likes to swing and swim and play with toys that are musical and light up. She adores music and watching movies with a great soundtrack! This little girl with big dreams finally got her big girl bed! Sunshine on a Ranney Day accommodated her special needs and was able to provide her with a comfortable and safe place to play with her favorite toys and family.

Family Photos

Photography by Kristi Weaver Photography

Before Sunshine

Photography by Kristi Weaver Photography

After Sunshine

Photography by Kristi Weaver Photography

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Photography by Kristi Weaver Photography