• 66°

4-year-old Lexington girl fights rare autoimmune disease

LEXINGTON (AP) — The unique name suits her. Rylee is a fun-loving, independent 4-year-old who manages a smile even through her taxing times.
“It’s a little quirky and different. It matches her personality,” suggests her mother, Jessica Lambeth. “She’s pretty shy until she gets to know you. But, she loves to dance and tell stories. She has a very strong personality.”
Rylee also has a rare autoimmune disease that severely affected her motor skills, and subsequent treatments have caused her to swell excessively, especially her face.
For three months she was being treated with steroids for what doctors thought was ataxia, or acute disseminated encephalomyelitis, which impacts the central nervous system.
At one point Rylee was unable to feed herself or walk.
With all aspects of her dilemma being atypical, it seemed fitting that the budding young gymnast was initially misdiagnosed, and oddly enough it would be chemotherapy treatments that are helping her to fully recover.
“She is slowly going back to Rylee, her old self,” says her mom.
There are plans for her to continue with gymnastics again soon and return to preschool in a few weeks. She will turn 5 on Aug. 13.
The Lexington family’s medical saga began in December of last year when Rylee decided to do homework.
She tried to pick up a pencil and write her name, but she couldn’t seem to hold it, her mother describes. “The next day I noticed she was a little wobbly when she tried to walk and fell out of our car getting out.”
After visits to her family physician, Rylee was eventually referred to Brenner Children’s Hospital in Winston-Salem, then last March to Boston Children’s Hospital where Lambeth credits Dr. Leslie Benson, a neurology specialist, with the correct diagnosis and treatments that are effective.
Benson concluded that Rylee is afflicted with small vessel central nervous system vasculitis, a complex malady that causes her immune system to attack her body and the small vessels in her brain to swell.
On their first trip to Boston in March, the Lambeths planned to stay just three days for a couple of tests. They wound up staying 13 days for even more testing on Rylee.
There was a second trip, this one for three days in June, to talk about results of the tests and look at MRIs.
“We’ll make another trip in October,” Lambeth notes. “We’re probably on a two-year journey.”
Rylee continues to take low doses of steroids because doctors are afraid her body may go into shock if the injections are stopped abruptly. She is being slowly weened from those treatments.
She will continue her chemotherapy, which serves to reduce the swelling. Eventually, she will go from the IV treatments to a pill.
Meanwhile, Rylee tolerates the IV and needles in her arm to withdraw blood for testing, like a champ, according to her mother.
“She’s a trooper,” says Lambeth, 27. “She’s definitely fussy sometimes, but she goes every two weeks for blood work. She stays strong, whatever is being done, and afterwards she’s pretty proud of herself.
“Whenever she stays in the hospital or taking a trip to Boston, she seems to find the good in everything situation she’s put in.”
Rylee has a strong support system at home. In addition to her mom and dad, Robert Lambeth, 30, her big brother, Bryson, 8, also becomes involved.
“He’s amazing,” Lambeth says. “He does everything he can to make her life easier.”
The family as a unit has also had financial support from friends, family and community.
A silent auction and benefit motorcycle ride in Lincolnton has been held, and Lambeth’s boss at Tumble Tots held a yard sale in May.
“We’ve been super-blessed,” Lambeth said. “We’re very thankful.”
The auction generated some $4,000, and the motorcycle ride more than $2,000.
Expenses for a third trip to Boston Children’s Hospital have already been secured.
However, some $36,000 in bills are pending.
“The medical institutions are working with us, and we’re doing what we can. The community has truly been so helpful.”

Comments

Comments closed.

News

Catawba College hosts three in-person commencement ceremonies

Local

With high case loads causing numerous staff departures, Child Protective Services seeks more positions

Education

Livingstone College graduates celebrate ‘crossing the finish line’ during commencement celebration

Coronavirus

Rowan sees 4 new COVID-19 deaths as mask mandate lifted, vaccines administered continue decline

Local

Spencer is latest town updating its development ordinance

Local

Salisbury native Kristy Woodson Harvey makes NY Times bestseller list

Local

Board of Commissioners will convene for third time in May

Business

Biz Roundup: Salisbury, Kannapolis among recipients of Region of Excellence Awards

Local

Cheerleading team competes at Disney

Education

Salisbury High to celebrate football, swimming champions with parade

High School

High school girls soccer: Isley, Webb lead all-county team

Local

Spencer awarded $10,000 to develop trails at Stanback Forest

Books

‘Tails and Tales’ coming to library this summer

Local

Public Records: March Deeds

Entertainment

Salisbury Symphony’s ‘Return to the Concert Hall’ available May 24-31

Coronavirus

Salisbury teen becomes one of first in age group to receive COVID-19 vaccine

Business

Local farm and creamery poised to add goat yoga, artisan goat cheese to offerings

Local

Pandemic’s impact, uncertainty of transit funding prompt request to eliminate Rowan Express service

Lifestyle

New Waterworks’ exhibit opens June 1

High School

High school football: Walsh accepts the South football challenge

Lifestyle

Price of Freedom Museum gets donated landscape project

Lifestyle

Rowan Museum will have Upscale Yard Sale Saturday

Business

Seventh dragon boat festival set for July 24; deadline for sponsorships is May 28

Nation/World

‘Shocking and horrifying’: Israel destroys AP office in Gaza