My Daughter Jordynn Rose 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, She has many additional abnormalities and secondary conditions as a result. We started her journey with Boston Children's Hospital at 15 days old.
J requires care from 10 + specialists, nurses and therapists. Boston Children’s hospital staff has seen her through 34 surgeries, inpatient stays, numerous diagnostic testing, evaluations and diagnoses in the past 8 years.She has many more in her future, BCH will be there every step of the way!!
Jordynn looks forward to coming to the hospital and seeing her favorite staff (sometimes up to 2x a week)! Boston Children’s hospital has become a part of the family, it’s her safe place. Everyday Scientist and Caregivers work tirelessly to find cures of amazing kids like her! The creativity and compassion they have done to make it easier for Jordynn is unbelievable. Staff go above and beyond to make sure many other children’s needs and hers 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 her!
Amy and Team Sparkle J Rose.