Kelly and Ryan’s two sons Dylan and Logan both have an extremely rare genetic disorder that has left the 7-year-old and the 5-year-old only able to say just a few words.
The couple’s sons suffer from Med13L, which can cause mental disabilities, speech and language impairment and motor developmental delays. It is also known to cause deformities, heart anomalies, epilepsy and childhood leukemia. There are only 15 known cases of the disorder in the world and unfortunately, there is no cure.
The family saw a glimmer of hope when Dylan became part of a trial for a speech communication device that allowed him to let his parents know what he needed, like if he had to go to the bathroom. When the trial ended, the family was forced to give back the life-changing device and they were unable to get insurance to cover the expensive item.
Kelly and Ryan join ER physician Dr. Travis Stork and plastic surgeon Dr. Andrew Ordon to share their story and discuss finally getting a proper diagnosis for their sons only a year ago.
“It was wonderful and scary all wrapped up in one. We were so fortunate to finally have some answers,” Kelly explains.
Due to the rarity of the disorder and a lack of treatment options, the family has turned to social media to connect with other families who are dealing with Med13L. They have been able to share what they have learned about how to best cope with the disorder.
Dad Ryan says communication is their biggest hurdles, explaining, “We don’t know what they are going through day to day.” Kelly adds that the boys’ behavior problems and not being potty trained makes day-to-day life difficult.
In an effort to make life easier, The Doctors surprise the family with a 1-year supply of absorbent pants from GoodNites Bedtime Pants. We also surprise the family with two Accent communication devices from Prentke Romich, which will hopefully allow Dylan and Logan to communicate better.