Volunteer helps make birthday special for local 8-year-old

Published 7:00 am Sunday, July 28, 2024

Keilani Mylee Jones loves running around and playing just like any other child her age. But because she has Pfeiffer syndrome, a rare genetic disorder characterized by premature fusion of skull bones (craniosynostosis), she has to wear a specialized helmet to prevent head injuries.

Keilani Mylee’s smile is infectious. She has a special way of making those around her feel happy. Such was evident at her birthday party held at Elite Gym.

Her father, Keith, lives in Milledgeville and works at Qarbon Aerospace. Her mom, Melissa, also lives in Milledgeville and works as a registered nurse.

“It’s wonderful that she’s able to celebrate her 8th birthday when you think about all that she’s been through in her life,” her father said. “She’s been through a lot and been through a lot of operations, too. They kinda counted her out from the beginning.”

Physicians didn’t think Keilani Mylee would survive after she was diagnosed with the illness that has no cure, he said.

“She spent most of last year at Children’s Hospital of Atlanta,” said Keith, who shares joint custody with his daughter’s mother. “So the birthday party means a lot to her and our family.”

Melissa said it was about 18 months after Keilani Mylee was born before she was diagnosed.

“The doctor in Athens where she was born came up to us and said our daughter looked different,” Melissa recalled. “She had a nasal feature and a big tongue, but then we kidded around and said she looked like her dad. That was the joke.”

The doctor’s belief wasn’t confirmed right away. A lot of genetic testing had to be completed before such a diagnosis could be made for certain.

“We finally wind up in Atlanta,” Melissa said. “It was there where she was later diagnosed with Pfeiffer syndrome.”

As it turned out, it sent everything into what Melissa described as a tail spin, because it was learned that Keilani Mylee also had craniosynostosis.

“They had fused prematurely, and she needed room for her brain to grow,” Melissa said.

It led to an 87-day in the hospital in Atlanta. There, more and more tests were performed.

A couple of surgeries were performed, one of which was needed to open up the her daughter’s airway. Melissa said her daughter’s journey has been a long one.

In February, the Joneses took their daughter in for what was supposed to be a routine procedure.

“It did not go well,” Melissa said, noting that Keilani Mylee had an infection earlier. “They wind up having to remove her frontal lobe. She actually had to have a skull surgeon out of Emory come in and do the tear repair necessary.”

Another infection set in.

Keilani Mylee’s frontal lobe is again needs to be repaired. But her parents have decided to postpone the procedure for as long as they can. From the time of her birth until now, Keilani Mylee has undergone at least 19 or 20 surgical procedures.

“She’s been through so very much,” Melissa said.

Despite many hardships, her parents have stuck by her through it all.

“We love her so very much,” Jones said of his daughter. “It’s been a difficult journey for us both because without the support of one another for our daughter, we have had no outside help. It’s really just me and her mother.”

Jones said his daughter’s mother spent the bulk of the time during hospital stays while he kept their son, Kamden, 18, who just graduated from Baldwin High School. He said his sister’s 8th birthday had come too fast.

“She’s having a great time out there playing with the other children in the Kid Zone,” Kamden said.

The Joneses were so surprised to see the beautifully decorated birthday cake made by Cindy Walton, who along with her husband, Jeff, brought the cake to the local gymnastics center from their home in nearby Putnam County.

Walton is a Sugar Angel volunteer with Icing Smiles Inc. It’s a nationwide nonprofit organization that delivers dream cakes at no charge to children impacted by various critical illnesses.

“We are so grateful for what she and the organization did for our Keilani Mylee,” Melissa said. “I know it took time and things aren’t cheap. Prices are so inflated. We really appreciate her taking the time to do make this beautiful cake for our daughter and for so many other kiddos who are ill throughout the country.”

Melissa said Icing Smiles Inc. has been a great organization to provide birthday cakes for her daughter and so many other sick children.

“They’ve always been phenomenal,” Melissa said. “The cakes have always tasted so good and they have always looked great, too. They’ve even done one for Kamden in the past.”

Walton said a lot of love goes into all the cakes she and other volunteers with the organization do for ill children.

“I studied art in school and a few years while living in the St. Louis area. I got into making gingerbread houses for competition,” Walton said.

When she and her husband moved south to Putnam County, she found out about Icing Smiles Inc.

“I said to myself, I could use my artistic and baking skills that way,” Walton said.

She soon became one of their newest volunteers.

“This is my third call to action,” Walton said.

One of her missions was to make a cake for a child in Decatur, Alabama. The other was to make a cake for an ill child in Warner Robins.

“This is my first action to make a cake for someone in Baldwin County,” said Walton, who worked for years at the U.S. Space & Rocket Center Space Camp in Huntsville, Alabama.

Her husband, Jeff, now retired from Boeing after 33 years, said he and his wife had lived all over the world. The couple lived two different times oversees, as well as seven different states.

Walton’s sister, Margaret, who lives in Maryland, is now baking cakes, too, for the same organization.