3 Year Old Piper Hill Battles Cerebral Palsy
story by Karlee Collins photos by Tonya Perry
Everybody falls in love with Piper. She’s just so happy,” says Debbie Floyd of her three-year-old granddaughter Piper Hill. Piper is diagnosed with Cerebral Palsy Spastic Quadriplegia, which means she lacks muscle control in all four limbs. In addition to her CP, Piper has CVI which is Cortical Vision Impairment and Epilepsy, and due to these diagnoses, she has significant global developmental delays, which means she is behind in all areas of development that the average toddler should be able to perform. Piper and her big sister, Caralina, are being raised by their grandma, Debbie. Debbie works full-time and is fully responsible for Piper’s care. She gets to see Piper for the beautiful girl that she is. “I like to say her little body is broken but her spirit is fully intact. She is such a happy baby. She, in her little three years, has taught me so much about life and living and love,” she shares.
“Unless something is hurting her or she’s hungry, then she’s laughing,” Debbie says. “She loves music, any kind of music really, but her favorite is praise and worship.” When Piper hears music, she stops what she is doing and directs all her smiling attention to the sounds. Despite her issues with her vision, she enjoys watching music videos too and tries to stay focused on them the best that she can.
When it comes to play time with her sister and cousins, she loves to be tickled. “She loves for them to come up and tickle her. They can just make the sounds and touch her like they’re going to tickle her and she will laugh,” Debbie explains.
The only thing that really makes Piper upset is when she is hungry! “She would make the perfect participant on a Snickers Hangry commercial. You let her get to that point where she’s just beyond hungry and she’s ‘hangry,’ she’s going to scream,” laughs Debbie. As long as mangos are not on her menu, then she is going to be satisfied with anything she’s given. “She does love her vegetables,” says Debbie. “But we all love vegetables.”
Each week Piper attends multiple therapies to help her grow and develop and stay healthy. “She’s getting Speech Therapy and they are working on trying to get her to say the sounds because she is nonverbal,” shares Debbie.“She makes her little sounds, but she doesn’t say any kind of words or even try to form words.” Her biggest form of communication is her laughter, but her therapist is working on increasing her sounds. She participates in two types of Occupational Therapy. With one therapist, they work on reaching and purposeful movement. With another therapist, she is working on feeding and working on chewing. Right now, Piper’s diet is strictly purees. To round out her therapies, Piper gets Physical Therapy to help keep her little body moving.
This year, Piper started three year old preschool. “She’s going to school two days a week for a half a day. That is a good start,” Debbie says. At school, she receives some of the same therapies that she is already working on and gets to play and learn with some awesome teachers. “This past week the teacher said that they were working on animal sounds, and Piper was loving the animal sounds. The teacher sent me a picture of her with a huge smile on her face,” Debbie says. “And my little baby is riding the bus!” The days of school are already encouraging for Debbie. Piper is getting extra support from those who are working with her at school, and the activity and busyness of a half school day seems to be helping with the insomnia that she battles. Her little brain is so active from her epilepsy that Piper struggles to sleep at night. “Her neurologist said that her neurons are just firing all the time and she has a hard time shutting her brain off. Some nights she just lays there and plays, but some nights you can tell she just wants to go to sleep so bad and can’t.” says Debbie. For a grandma to see her baby struggle to sleep, it can be heartbreaking. Debbie is thankful for school and hopes the pattern continues where busy school days lead to nights of good rest for Piper.
Debbie is a single parent to Piper and her sister. She shares that there are not any support groups in our area that are specifically related to families facing Cerebral Palsy. “All the support groups around here are either for Autism or Down Syndrome,” she says. “CP is such a large diagnosis.”
Many that are diagnosed with CP may only have issues with one body part and it may not be an obvious struggle. Others, like Piper, have difficulty in many areas and the CP affects all parts of her life. For a family that is dealing with CP, a network of help and support is so needed. Fortunately for Piper and Debbie, the Effingham County Navigators have welcomed them into their support group. Although this group is not targeted to families dealing with CP, it has been a blessing to Debbie. “We’ve gotten a lot of encouragement from that group. It’s just a monthly meeting that you go to and then they have events that you can go to. They had a Christmas party in December,” she says. “It was pretty cool.”
CP is a broad diagnosis and the awareness about CP is much less than other disabilities. For Piper and Debbie, the need for greater awareness in our area is great, and Debbie hopes that by sharing Piper’s story people will see the need to seek out and support Piper and others that are battling this lesser known disability.
Currently, Debbie’s mission is to raise the funds necessary to purchase a handicap van to assist in transporting Piper to her many doctor’s appointments and therapies. “I’m only five foot three, and she’s already three feet tall. It’s just only going to get harder and we know it’s going to take us a while to come up with this money, and that’s why we’re starting now,” she says. “It’s getting to the point where we just need to be able to transport her.” Right now, Debbie moves Piper from her car seat to her wheel chair and back in again every time they need to go somewhere. During cold or rainy weather, this difficult process becomes more taxing, and as Piper continues to grow, it will be nearly impossible for Debbie to go through this process. A better mode of transportation is necessary in order for Debbie to leave Piper in her chair and roll her straight into the van, but a handicap van comes with a 50,000 dollar price tag. The fundraising has begun, and they are just shy of 3,000 dollars.
Piper’s story can be followed on her Facebook page, “Prayers for Princess Piper.” There, information can be found to donate toward her handicap van via GoFundMe and get involved with upcoming fundraisers. The page will be carrying information about a Boston Butt sale in honor of Piper’s van fund that will take place March 30-31. As a community, Effingham should rally around Piper and be aware of the needs of those that battle a Cerebral Palsy diagnosis.