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Harper Jamison

Bio

Harper is a very loving, happy four year old. She has the most contagious laugh and smile. We hope to share her story all over so her and all the other kids who suffer from these terrible illnesses can get a treatment or cure. We aim to make everyday of Harpers life the best. Making memories and enjoying new adventures.

Story

Harper has been on a medical journey since she was 2 weeks old; from testing for Cystic Fibrosis and finding out she is a carrier to spending her first year constantly sick and being hospitalized three times. Then at her one year well child appointment, they sent us to the University of Iowa due to signs of Retinoblastoma. After a month of appointments, exams, testing, and ultimately the removal of her left eye, they determined she did not have Retinoblastoma. When she was two and a half, she had a hearing test under sedation where they determined she has bilateral mild-moderate hearing loss.
She has been a trooper through it all. She is now four, almost five doing very well with her glasses, hearing aids, and prosthetic left eye. Along with all her doctor appointments, she has been in physical therapy, occupational therapy, and speech for the last couple years. This has been great for her as we try to keep her progressing. It does take a toll on her but she works through it.
March 28, 2023 Harper was diagnosed with Sanfilippo Syndrome (MPS III-A). This has been a very hard year with this diagnosis but we try to make the best of everyday. We share her joy and advocate anytime we can for this rare genetic condition.
We hope for a trial that will have a cure or treatment for these kids in the near future.

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