Parents: Chelsey & Nathan
Year of Birth: 2019
Hometown & Country: Catonsville, MD
A Message from Piper's Parents:
We had a pretty normal pregnancy, with minimal indication of her genetic disorder. At 26 weeks there was some shadowing on her heart that made it appear as if there was a hole in her heart. We sought help from DC children’s hospital and later found that she did not have a hole but rather two superior vena cava veins to her heart. The rest of our journey was easy going, delivery went smoothly, but when Piper was getting her shots and checked in she stopped breathing a few times.
Two hours after delivery they decided to admit her to the NICU at shady grove hospital in Silver Spring, MD. She was placed on oxygen and a feeding tube. She had also not yet opened her eyes. By the third day of not opening her eyes we decided to seek help from an ophthalmologist, they did an MRI and said that her eye gloves were normal, but the eye exam revealed that she had little to no cornea. After 7 days we transferred her to Johns Hopkins hospital to be closer to Wilmer eye institute. She spent 32 days in the NICU while we advocated to get her home as we began the journey of learning and understanding her genetic disorder. After 3 months we got the results of her genetic testing which showed she had MCOPS12. We found a specialist in Pittsburgh at Children’s Hospital there, who knew of this condition and met an ocularist that could make Piper conformers. We make the journey every 6 months to have her seen in Pittsburgh, PA.
Piper is now almost 4. She started at Maryland School for the Blind Early Learning in fall of 2022 and just completed her first year! She has received all therapies (speech, PT and OT) while at school. We are also connected with Kennedy Kreiger Institute in Baltimore where she can also get PT, OT, speech and high intensive therapy. Piper will be going to Extended School Year (ESY) this summer at the school and return in the fall for a full school year once again. Piper is learning to communicate both verbally and with sounds or cues, she is eating by mouth along with tube feeds, she is free of additional oxygen and making strides in both PT and OT, she can stand at a walker, bar or gait trainer and can sit and play unassisted!
Piper loves horses, she loves to swim and splash, she enjoys all music and playing instruments (bongos, ukulele and guitar) and she loves swinging! And she loves her new baby sister (5 months old now).
What are our Dreams for Piper?
We hope that Piper just continues to grow, learn and progress! We hope that she continues to explore her surroundings and to be curious. We hope that she can one day verbally communicate her needs, gain more independence and mobility.