During our ultrasounds with Grace we were constantly told how much hair she had. Aaron and I struggled a little bit to agree upon a name for her so we made a deal; if Grace was born with red hair her name would be Emma but if she was born with brown hair I would get to name her Grace. When she was born the first thing we noticed was her full head of dark brown hair but the next thing we noticed was the skin missing on her fingers. I asked the midwife what was wrong with them but she said she probably has sucked the fingers while in the womb. Within the next few hours we realized something was wrong; her skin was pulled off when the Band-Aids from her new born vaccines were removed. Less than 24 hours after birth we were transferred to DC Children's and obtained a referral to Children's Hospital of Philadelphia. At nine days old Grace, Aaron, and I traveled to the EB clinic and were told she definitely had EB but we would do genetic testing to determine what her subtype was. We received this information four weeks later; severe junctional epidermolysis bullosa. We all were devastated, however, Aaron and I told her we would fight for her as long as she would fight.

During her 13 months with us we learned who she was; she was the spunky, spirited, and perhaps a slightly rebellious red head (as her hair faded and she became the best red head) who soon earned the nickname of "Goose". Grace was inquisitive, loving to watch faces, and the day-to-day happenings of those around her. Her medical team was a little different than other EB babies as her local practitioners were fierce advocates for her. During her interactions with these multiple specialties, Grace taught them it was okay to change standards and go against policies and procedures if it meant the best outcome for the patient.

Grace will always be remembered for her love of her momma, dada, siblings, beer, peanut butter ice cream, Bluey, bald headed men (especially Mr Jim and Sam), Frozen, pig tails, her pride in her 8 teeth, and the joy she got when her dada told her to tell EB how she felt about it. They would both say, "f*ck' em EB I am going to show you. I am a strong baby." Our dear Goose kicked EBs butt until her last breath.