DECATUR — For such a little girl, Giannah Wilkins has a lot of responsibility.
The 21-month-old's big brown eyes and pink-cheeked smile will encourage those who visit the Decatur Drivers License Facility to sign up to be organ donors, thanks to a countertop display that features her.
“I believe that every day, you must do something to help someone else,” said Secretary of State Jesse White, who visited the Decatur facility on Tuesday to deliver the display. Giannah and her family, including great-grandparents Jack and Joyce Keller, were there to receive it.
The Kellers volunteer with the Decatur Power Tumblers, which is based on the Jesse White Tumblers. White helped the Kellers get the group started and is in regular contact with them to keep it going.
“It's nice to let people in the community know that someone within their community has been the recipient of an organ,” White said, gesturing for Giannah and her mother, Katrina Gramigna, to join him at the podium. “This is what today is all about. This young lady needed a heart. Thanks to the generosity of someone else, she got a second chance of life, and we hope that she will live it to the fullest.”
Illinois has about 6 million people on the state Organ/Tissue Donor Registry, according to the Secretary of State's Office. It said about 4,700 people are on the waiting list.
Giannah received a heart transplant in December 2017 at the age of 7 weeks. Her mother was informed of Giannah's congenital cardiomyopathy before the little girl was born, and that her chances of survival were grim. The hospital even gave Gramigna a teddy bear that holds a recording of the baby's heart, so Gramigna would have that to remember her by.
At St. Louis Children's Hospital, doctors decided to try giving Gramigna medication for congestive heart failure, though her own heart is healthy, in the hope that the medication would penetrate the placenta and keep the baby alive until birth. It worked, and she was placed on the transplant list, but donor hearts for babies are rare.
Nevertheless, she did receive one, and while she has to be on anti-rejection drugs for life and will likely require another transplant once she's an adult, she is thriving. Gramigna was warned that Giannah's medical problems could result in developmental delays, but they haven't. She started walking and talking right on schedule, and having a house full of doting elder siblings — Neveah Carter, 17; Antonio Carter, 14; Jaxson Carter, 8; Nico Wilkins, 6 — helps.
Those siblings have to be very careful about keeping current on vaccinations and flu shots, and remember that even a minor cold for them could be life-threatening for their little sister's compromised immune system. Giannah has been hospitalized three times this year for various ailments including pneumonia, and she still requires tube feeding due to an overactive gag reflex, but she is otherwise doing very well, her mother said.
Right now, Giannah is in a phase where she wants to kiss everybody, said her grandmother, Jenai Thompson, and that worries her family due to possible germs.
White said that Giannah is one of the best advertisements available to encourage people to sign up to be donors.
“She's loaded with personality and good looks,” he said, smiling at her in Gramigna's arms. The little girl applauded everything White said, so he added, “And she doesn't mind cheering for herself, either.”
Joyce Keller called Giannah "a miracle baby," and said through tears that the family prays for the donor family daily, knowing that their tragedy and generosity saved Giannah's life.
The donor family, as is their prerogative, have not contacted Giannah's family, and Gramigna said she understands.
"It's been such a blessing to us," she said.