Landon Ashby’s parents, Christie and Travis, call the 11-year-old the family’s little mayor.
“Any day you go out with Landon, somebody knows Landon, or somebody knows somebody that knows Landon,” Christie Ashby said. “He’ll just go out and say hi, hug somebody, or want to shake their hands.”
Landon has gotten to know many people in the Owensboro community as a student at Meadow Lands Elementary School and through he and his family’s involvement with the Green River Down Syndrome Association (GRADSA).
The family — which also includes Landon’s brothers, Parker, 9, and Carson, 4 — plan on participating in GRADSA’s 20th annual Buddy Walk on Sept. 30 at Smothers Park.
The Buddy Walk is GRADSA’s largest fundraiser of the year, and this year’s goal is to raise $40,000, according to the organization’s website.
Kyle Gorman, president of GRADSA’s board, describes the day as more of a yard party, with a variety of entertainment and activities.
The Buddy Walk allows “people to get together, socialize (and) enjoy some time together while building awareness in the community about Down syndrome and allow families that we serve to socialize and share resources,” Gorman said.
Participants can create and/or donate to fundraising teams.
Most of the money raised stays in GRADSA’s coverage area, which includes Daviess County and several nearby communities, Gorman said. About 7% of proceeds go to the National Down Syndrome Society.
GRADSA uses the money it raises to advocate for people with Down syndrome at the local, state and national levels.
“One of our big mottos is ‘more alike than different,’” Gorman said, “which is something that is spread through the national Down syndrome community. We help the community realize people with Down syndrome are capable of doing the same things. Many of these individuals are employable. … We advocate for these individuals, make sure our school systems and employers know these individuals can be contributing members of our society, as well.
“(There are) sort of three tiers: support families, individuals and community awareness.”
Landon was diagnosed with Down syndrome shortly after he was born, and his family got involved with GRADSA through a friend who also has a child with Down syndrome.
The organization has been a great support system, Christie said, especially when Landon was diagnosed with a severe heart condition – an AV Canal defect, which many children with Down syndrome have.
Landon spent some time in the NICU at St. Mary’s Hospital in Evansville, and some members of GRADSA came to visit the Ashbys when they got home.
“They give you all these books and information, and that was so helpful because the Internet and Facebook 11 years ago wasn’t what it is now,” Christie said. “We got involved with all the parents. That helped us to see that all these parents are doing it, and somehow they are making it. They are fine, and they are making it – especially when it came to his heart issue. A lot of people went to Kosair (Children’s Hospital) and the same surgeon and were able to get us through that.
“And then with our hospital stays now, they have been reaching out to us. Just the support has been very helpful.”
Landon had open heart surgery at six months old, and then had his tonsils and adenoids removed when he was 3 because he had sleep apnea, an issue many children with Down syndrome have.
Landon was a healthy boy until Labor Day weekend of 2015. He had a rash on his feet that wasn’t itching. As the hives got worse, his parents took him to the pediatrician, and Landon was initially diagnosed with poison ivy and then allergies.
The hives continued to worsen, and blood work showed his white blood cells were off, so he was referred to Norton Children’s Hospital (formerly known as Kosair Children’s Hospital) in Louisville. Over the course of several months, Landon spent three weeks at the hospital as his symptoms evolved and his diagnosis changed. He would eventually have sore joints, an enlarged spleen, an enlarged liver and pneumonia.
Christie said Landon was sent home with a diagnosis of Crohn’s Disease, a gastrointestinal disorder, but that didn’t seem right to her – especially with his joint issues.
When Landon had to be carried into his pediatrician’s office in Owensboro because he couldn’t walk, the Ashbys asked that he be referred to another hospital, and he was sent to Cincinnati Children’s Hospital.
There, after a gastrointestinal doctor determined Landon didn’t have Crohn’s, a rheumatologist was brought in, and Landon was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA). By this point, it was November.
SJIA is triggered by some unknown factor – it’s unknown if it’s genetic or environmental – and then the person starts getting rashes or joint pain. The condition is systemic because it involves the organs as well as the joints.
Landon had a port installed under the skin so that he could receive infusions of a strong medicine called Actemra every two weeks.
Everything was going fine until June of 2016, when Landon’s port wasn’t functioning properly, and it was replaced that July. Within two weeks of that surgery, Christie said, the incision started looking bad, and he got very sick. One morning, Landon’s parents couldn’t wake him, and he was taken to Cincinnati Children’s Hospital.
He had become septic because he had a Methicillin-resistant Staphylococcus aureus (MRSA) infection at the site of the port and in his blood. The port was removed, and he receives a monthly shot of Ilaris to treat his SJIA.
He now has an undiagnosed lung disease in his right lung, and he went to Cincinnati in mid-August for an open lung biopsy to determine what lung disease he has and if it can be treated by Ilaris or something else.
Despite the hospital stays over the last two years, Landon remains resilient, his mother says.
Landon hasn’t been able to be involved in as many activities as he would like. Before he got sick, he was very active in Buddy Ball, playing several sports, Christie said. Landon was able to swim and attend Puzzle Pieces all summer, two activities he enjoys. He is also involved in the Super Kids Soap Box Derby at Ben Hawes Park.
Christie uses Facebook to keep her family and friends updated on Landon on a page called Invincible Ironman Landon. They picked the name because Landon’s father, Travis, told him once that he is tough like Ironman.
The family also raises money under Team Ironman Landon for the Buddy Walk.
“Just doing the walk with families that have Down syndrome, it’s kind of one of these things, we’re surviving, and we’re here for each other,” Christie said. “It’s just a great support.”