CALDWELL COUNTY, N.C. (WBTV) - We first started following now 12-year-old Deanna Lawson’s story in 2015. Six years later this Lenoir girl has been diagnosed with a new syndrome. Her mom says it’s extremely rare: She’s one of only 100 people worldwide living with it.
“She continued to thrive at school (at Gamewell Middle School in Caldwell County) and in academics the past year, despite her worsening health,” Janey Porter said about her daughter. “She was having undiagnosed symptoms for two years and we finally did a full genetic panel. Turns out she has Pallister Hall Syndrome. That’s a very rare genetic disease.”
I did a little research. There is no cure for Pallister Hall Syndrome and it can be life threatening if her pituitary, adrenal, and thyroid functions aren’t regulated.
“We did test her thyroid” Janey said. “The tests came back as showing that she had no thyroid function at all. It’s all so odd. We’re heading to Boston Children’s Hospital this summer for further evaluation.”
While there, Deanna could have surgery on her chest mass.
In other words, there’s a lot. Here’s a list of things this remarkably happy girl deals with:
- Pallister Hall Syndrome
- Klippel Feil Syndrome
- kidney disease
- pulmonary isomerism
- lives with autism and is nonverbal
- Hashimotos (which might be the result of the Pallister Hall)
That second syndrome, Klippel Feil, is also rare. It affects all major organs, spine, muscles, vision, hearing, and causes chronic pain.
As Janey explained in past posts, Deanna was adopted at birth.
“Dee was born to a homeless woman addicted to meth,” said Janey. “In the first four months of life she had two major heart surgeries and four eye surgeries, and she also only has one kidney. But we’re full of love and she is amazing. I want the world to know her.”
We love knowing the educational updates, Janey. Helps remind us we all need to go hug our kids. Thank you.
The Good, the Bad, and the Always Real.
Past #MollysKids posts on Dee:
- July, 2015 >> https://tinyurl.com/DeeLawsonMKs
- July, 2017 >> https://tinyurl.com/DeeLawson2MKs
- Aug, 2018 >> http://tinyurl.com/DeeLawson3MKs