December 2023 Special Needs Living Magazine

A little bit of mystery surrounded by a lot of love! THE STORY OF LANDON FRANCIS

BY ANDREA HURR PHOTOS BY JULIAN CURET

What do you do when your child is considered a “mystery boy”? When doctors believe there is something more going on, but they have been unable to figure out what exactly it is? For Ashlee and Jared Francis, this is their reality. Their 3-year-old son Landon is this “mystery boy”. They will not stop trying to figure out his full diagnosis or what is going on with him, nor will they ever stop loving him and being his advocate.

A little backstory… At around 6 months old Landon was not meeting all of his milestones. After many referrals to doctors of various specialties, he was diagnosed with severe hypotonia (weak muscle tone), global developmental delay, level 3 autism (level 3 requires substantial support and is characterized by severe challenges in social communication as well as extremely inflexible behavior), obstructive sleep apnea, issues with chromosome 16 (many genetic conditions are related to problems with the genes on chromosome 16), and most recently epilepsy.

While this list of diagnoses for their 3-year-old seems overwhelming, the most frustrating thing is that Landon’s doctors believe that there is something else going on, but no one can seem to figure it out. The Francis family has even driven all the way to Missouri Children’s Hospital and spent a week undergoing tests and visits with the doctors there, but still have no answers. Landon is in an Undiagnosed Disease Network. Adding to all the question marks surrounding Landon, he is nonverbal and cannot crawl or walk. He is unable to effectively communicate to his parents how he is feeling or what he needs. Despite all of these obstacles, Ashlee says that “he is a happy little guy, and nothing will stop him”. Landon has two sisters, Chloe (7) and Isabella (10). They are a huge part of his life and Landon absolutely adores them. As a family they are doing their best to address his needs with speech, occupational, and physical therapies as well as tackle each diagnosis as best they can while remaining positive. “It ain’t easy, but my motto is: If your kid is smiling, then you should be too,” says Ashlee. She suggests trying not to compare your journey with others and to be grateful in each moment, even when you feel 100% alone. Ashlee says, “When you have a special needs child, there are labels, titles, and scary words that become your reality. Get comfortable with them, but don’t let them dim your light.”

Ashlee and Jared try their best to remain hopeful even while waiting to find out the unknown. They are in a special needs group on Facebook called Ohio Special Needs Families and Ashlee reads a lot of books about other children and families in the special needs community for comfort and clarity. Ashlee says that there is nothing more devastating than watching your child suffer or struggle. “If I could give him my legs, I would,” she says. Ashlee goes on to say, “We (special needs parents) are trying our very best for our children but there are times when you heavily doubt yourself, especially in moments of being out in public”. She offers up some advice and says, if you have a friend or family member with a child who has special needs, remind them that they are a good parent or that they are doing great. “We need to hear that just as much if not more than most parents… I’ve been blessed to have many people encourage me in moments when I truly need it most. Honestly, it helped shut out those demons in my mind that told me I was not doing enough. So, tell the parents they’re doing great, you might give them what they need to make it another day”.

Here’s to hoping that Landon’s doctors can identify what else is going on with him and he can lose the title “mystery boy”. Ashlee and Jared Francis are wonderful parents doing a great job!

“[Being a special needs parent] is a journey that you will take one step at a time” — ASHLEE FRANCIS