Hi my name is Jordynn Rose. I was born with Greig Cephapolysyndactly syndrome. A rare genetic disorder affecting the development of limbs, head and face. It can include developmental delays, seizures and hydrocephalus, I have many additional abnormalities and secondary conditions as a result. I Started my journey with Boston Children's Hospital at 15 days old. I require care from 10 + specialists, nurses and therapists. Boston Children’s hospital staff has seen me through 34 surgeries, inpatient stays, numerous diagnostic testing, evaluations and diagnoses in the past 8 years. I have many more in my future, BCH will be there every step of the way!!
I look forward to coming to the hospital and seeing my favorite staff (sometimes up to 2x a week)! Boston Children’s hospital has become a part of my family, it’s my safe place. Everyday Scientist and Caregivers work tirelessly to find cures of amazing kids like me! The creativity and compassion they have done to make it easier for me is unbelievable. Staff go above and beyond to make sure many other children’s needs and mine are met.
On June 9, 2019 I will be participating in the Eversource walk for Boston Children’s Hospital. I would like to raise funds to help continue their amazing care and Research. Any donation large or small will go a long way to help children like me!