Jasmin and Lance Leadon were born 5 ½ years apart with the same rare condition, Autosomal Recessive Congenital Hypo myelination Peripheral Neuropathy. Born 10 weeks early in 2011, Jasmin stayed in the hospital for 6 months. Undergoing surgeries and a myriad of testing, Jasmin was not officially diagnosed until her brother Lance was born in September of 2016, despite prior genetic testing. When Lance was born presenting the same way as Jasmin did at birth—not crying, not breathing, bi-vocal cord paralysis and unable to successfully wean off the ventilator—doctors decided to compare the DNA in their blood. This is when they found the misspelling in their gene that led to their diagnosis. After a 3 month hospital stay, Lance was able to join his sister at home.
Doctors explained that the Lil Leadons are the only two alive in the United States with this condition that affects their motor-neuro functions. Both children have tracheostomies and g-tubes and have not yet walked or talked. Having been told that kids with this condition normally don’t live beyond the age of 7 months, we are blessed that Jasmin “Jazzy” will be 8 years old in January and Lance turned 2 in September. Their parents, Keith and Maria, have always taken the stance, “We Believe God!” and “We reserve the right to hope,” and have watched as their children continue to overcome the odds of their diagnosis.
Every day with Jazzy and Lance is a gift and Keith and Maria are determined to show them the world. Being wheelchair bound with much equipment, however, limits the Lil Leadons from traveling safely to and from appointments or taking a vacation. Therefore, Keith and Maria’s goal is to attain an RV to allow them to travel as a family with a goal of giving them a life and not simply keeping them alive.
PLEASE JOIN US AT COMPASS COMMUNITY CHURCH AS WE RAISE FUNDS FOR THE LEADON FAMILY.
