Ed: Raising a Miracle Baby in a Pandemic
Jacqueline Kirby is a miracle. At just four months old, she’s already beaten the odds more than once — when she was just days old, her doctors told her parents Ed and Joni she wouldn’t live more than a few weeks because of the rare genetic disorder she was born with called non-ketotic hyperglycinemia (NKH). But Jacqueline, or Jackie for short, is a fighter, “she is just a really strong little girl — they said she would never look at us, and she looks at us. They said she would never eat on her own, and she eats on her own,” said Ed.
Her parents knew she had a long journey ahead of her, but Ed and Joni never expected to have to shield their baby from a pandemic, too. “Coronavirus would devastate her if she was to get it. We have to be very careful. One of us usually stays home with her all the time and the other one goes out and gets what she needs. It’s very hard for us to do anything as a family anymore,” said Ed.
From driving an hour to get the baby’s medications, to stocking up on necessities, It’s been difficult for Ed and Joni to get everything Jacqueline and her three siblings need during the COVID crisis. Ed and Joni are also caregivers to Joni’s disabled sister, who they love dearly. Ed had a contracting business before the pandemic, but the work has disappeared. Although Ed is a veteran and has applied for benefits due to the impacts of service— like hearing loss and PTSD — he has not yet received them. “I don’t have any savings anymore, because after this everything I had is gone. It’s been week-to-week and month-to-month. We are just trying to survive. We scrape by,” said Ed.
With four children in the house, one with special needs, the $500 emergency cash payment couldn’t have come at a better time. Ed & Joni paid the family’s mortgage and the electric bill. “We are so grateful,” said Ed.
After the crisis, Ed and Joni want to once again build up the charity they started in Jacqueline’s honor. Since her disease is so rare, there is very little research on it, and Jacqueline’s parents have taken things into their own hands and arranged fundraisers for the University of Notre Dame, one of the few institutions looking into NKH. “Hopefully they will continue the research and be able to find a gene therapy that helps our daughter. That’s the biggest thing we hope for.”
Ed also wants to spend time with his kids outside, especially his son who is graduating high school this year. “We want to actually get out and do something as a family and enjoy ourselves. We love to get out in nature.”