HICKORY, N.C. (WBTV) - This collage shows Emily Layla Grace and her large family in Hickory. More on them in a minute, but first, a bit about this now 3-year-old, who celebrated her birthday his week.
“Normally we are in the hospital,” said her mom Kerry Fleenor. “This is the first birthday Emi celebrated at home. That was a blessing!”
Emi’s story is complex and beautiful.
This little girl was born as an addict, and very early at only 24-weeks. Kerry and her husband Paul adopted her when they met her at 3-months old in the NICU. Kerry says she’s not sure how much the addiction – no fault of Emi’s – plays into Emi’s medical history, she only knows as a newborn she failed her hearing test, couldn’t see very well, was on a ventilator, and had two holes in her heart.
They also know she was a fighter. Doctors only gave her a 3% chance of living, and she is still here.
“I don’t want to harp on what happened while her birth mother was pregnant,” said Kerry. “Because ultimately, she gave us best gift we can ever ask for. She gave us Emi. Once I met her, immediately, I knew I’d love her forever.”
Kerry and Paul took Emi home from NICU when she weighed 4lbs. But because of continual digestive issues, they ended back at Levine Children’s Hospital when she was 5-months old.
That began what Kerry calls a, “never-ending hospital stay.” They go back-and-forth because of multiple complex medical issues; she says the family has literally lost count of how many times they’re admitted. Early on, most problems surrounded feeding. Emi was placed with a G-Tube and then at 14-months, was diagnosed with intestinal failure and eventually started TPN (Total Parenteral Nutrition). Basically, that’s just an IV feeding technique, getting nutrition into a body through the veins. Her mom says she’ll most likely be on TPN for the rest of her life.
“She has just always had trouble eating,” Kerry said. “She has been diagnosed with FPIES, to EOE, to Gastroperisis. Each of these things leads Emily to severe pain and poor absorption issues. As if that’s not enough, our girl has also been diagnosed with chronic lung disease, juvenile osteoporosis, Diabetes Insipidus, hypoglycemia, conductive hearing loss, bilateral hydro nephrosis, and severe anemia.”
Those things are hard to pronounce, let alone live with.
“But if you meet Emi,” Kerry says, “you’d never know she has such severe medical challenges.”
Just look at that smile in the bottom right corner of the collage. The other pictures are fantastic, too. Emily, her mom says, is surround by love. Tons of siblings. A large blended family filled with joy.
“My husband Paul’s first wife, Dani, passed away from cancer and she has two wonderful children,” Kerry said. “Their names are Brian and Samantha. Paul raised them after she passed and now they are our adult child children. Paul and Dani also had one child, Gabrielle. I’ve been with her since she was 8-years old… she’s now 25. And then Paul and I have two biological children: Izak, 16, and Alex, 13. Last but not least, we adopted Matthew and Emily.”
Matthew is 6 and Emily, as said before, is now 3.
“They are all our children,” she said. “Some are grown and some are still in the house. We love them all the same!”
All are pictured here, except older brother Brian, who lives in Banner Elk. Photo of him below in comments.
Emi is also part of The Pallative Cardinal Kids Program in Hickory. This is a community based health care program dedicated to helping families face the endless challenges that come with serious illness. You can find more about them on the website, here >> https://www.carolinacaring.org/cardinalkids.
“I can’t say enough wonderful things about them,” Kerry said. “They have helped us fight for her and give her the best quality of life possible. The people who work there agree that Emi is a ray of sunshine and lights up a room. As her mother…”
“…As her mother, Emi teaches me to be a better me. When I want to cry, or be mad or sad, about her circumstance or future, she just smiles at me and says, ‘It okay, Mommy. I okay.’ Emily Layla Grace is a miracle and a warrior, rolled into one.”
Welcome to #MollysKids, Emily. Thank you so much Kerry for sharing her with all of us. Please keep us updated.