When Landon was born, his parents had no idea he had any complications. There were no hints of a disability, but at six weeks old, he was life-flighted to a hospital. They were told he had only a 75% chance to live. Doctors said if Landon made it, they would be exceptionally lucky if he did not need a heart transplant.
Baby Landon, was later diagnosed with NONO gene deletion. There isn’t an official name for his condition because he is only the tenth child to have received this diagnosis. Because so little is known about what Landon’s life will be like, Morgan and Rikki have to conquer Landon’s challenges one day at a time.
Living Day to Day with a Rare Disability
“Focus on what you’re dealing with TODAY and the situations at hand TODAY…then tomorrow figure out what you’re going to do tomorrow. That makes it manageable,” Rikki said.
They were fortunate enough to contact, and become friends with a woman whose son has a NONO gene deletion as well. Her support is invaluable in their journey, since Morgan and Rikki are not often able to get answers from doctors.
Landon reaches milestones slower than other children but they celebrate every accomplish. Sometimes, however, they have to back track. Landon will wake up one morning and “all his words are gone”. It is on days like these when Rikki says, “find those who can really support you in your journey.”
Disability is Hard, But We are Happy
Even though Landon’s NONO gene deletion – diagnosis is difficult, (at one point he had seven doctors all poking and prodding him, trying to figure out what was wrong), Landon is still as “happy as can be”. Everyone loves him, he is playful and always flirting with the nurses.
Morgan says the biggest takeaway is, “It’s rough for you but imagine being the toddler…If they can be happy, be happy with them.”