Molly’s Kids: Lucy Kale has a genetic disorder so rare, it doesn’t have a name

Molly’s Kids: Lucy Kale has a genetic disorder so rare, it doesn’t have a name
Lucy Kale has a genetic disorder so rare, it doesn't have a name, but after years of struggling with schools, Lucy's parents have now found a loving classroom for their daughter. (Source: Provided by Family)

CHESTER, S.C. (WBTV) - Lucy Kale has a genetic disorder so rare, it doesn’t have a name.

At 7 years old, this Chester, South Carolina girl can’t speak, suffers from epilepsy, relies on a tube for feeding and hydration, had to have surgery to remove a benign brain tumor and though she can walk, does so gingerly and with assistance. Her dad was direct in his email about his daughter, and her unnamed illness.

“She basically cannot do anything for herself,” Danny Kale said. “But as her father, it doesn’t matter. To know her is to love her.”

Danny’s email was mostly about their family’s issues with finding a school to help educate his 1st-grade daughter. As you might imagine, it hasn’t been easy.

At the age of 3, her family found a preschool with special needs accommodations, but Lucy cried every day before being dropped off. Because of insurance reasons, her teachers couldn’t hold her to calm her down. But her parents persisted – they wanted their girl to have a social life, early education and to meet other kids - until one day the school nurse was absent. Lucy, who is tube-fed and tube-hydrated, didn’t get anything to drink.

Her parents pulled her out the next day.

Next up, a private preschool. This particular school had a special needs class. It worked beautifully until Lucy aged out at 5 years old.

This is where things got tricky.

Her dad says there aren’t any elementary schools within 50 miles of their home in Chester with special needs classes. After contacting many schools and trying all kinds of hoops, Lucy was eventually granted into the public elementary school she’s zoned for, if she brought a full-time nurse assistant.

“She had a great year there," Danny said. "The nurse helped her adjust to the “normal” classes, despite the school not having special needs programs. The peace Lucy had and we felt, was immeasurable.”

But out of nowhere, Danny says Chester County revoked Lucy’s privilege of having a nurse. He says the school system is demanding she go back to the school that didn’t give her any water for a day.

“We filed state and federal complaints,” he said. “In the meantime we begged Westminster Catawba Christian School, who didn’t have any special needs program, to help Lucy in the 11th hour. They took pity and Lucy got enrolled in a developing 1st-grade class with a part-time art teacher as her one-on-one aid. To prepare Lucy’s new classmates and their parents for the addition of a student who is ‘intellectually and physically-disabled,’ Lucy was asked to start a week later than her peers. We also wrote a letter to other parents explaining our daughter’s condition.”

The response to this letter? Overwhelming support. Parents reached out to Lucy’s family the same day the letter was sent home.

Danny says the following is just a glimpse of what happens inside the classroom:

  • Classmates “hold her hand when she walks.”
  • Play with her at recess.
  • Students “read books to her.”
  • “Our daughter actually has friends now.”
  • Lucy has a new communication device, and students try to help her use it.

“She has become a part of the class," Danny says. “One little girl comes up to Lucy in the morning and asks, ‘Lucy are you happy today?’ She will then help Lucy push ‘Yes’ on her device.”

Imagine if you were a parent of a child with an unnamed illness and after years of struggling with schools, this was the beautiful result.

“I really cannot express how much it means for her to do activities with the class,” Danny said. “If there’s something she can’t do, the aid works with her one-on-one privately. Lucy will hopefully be staying with this class as she moves to second grade. I wanted to write you because so often there are complaints about schools and districts and teachers – believe me we went through them ourselves ready to pull our hair out – but the end result is a school that is just plain awesome. Thank you to Westminster for accepting our daughter and teaching other kids to accept her and follow the school’s lead.”

Happy to share, Danny. Acceptance and love are important parts of life and we’re thrilled your daughter is finding both.

More pictures below.

#MollysKids

PS: For those wanting to know more about Lucy’s genetic disorder – I know many of you know and love children who live with disorders and this will mean something to you – Lucy has a microdeletion on chromosome 1 at 1q41,1q42.12.

*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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