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May Calendar Kid: Dylan defeats rare genetic disease
May 08, 2020

Dylan defeats rare genetic disease

May calendar kid defeats rare genetic diseaseDylan likes Grinch movies, is a picky eater and loves to be read to. He’s also energetic and talkative, something that hasn’t come easily for the 6-year-old who was born with Pierre Robin sequence.

Pierre Robin sequence is a rare congenital condition characterized by a small lower jaw (micrognathia), tongue placement farther back in the mouth than normal (glossoptosis) and blockage of the airway. Some babies, including Dylan, are also born with an opening in the roof of the mouth (cleft palate). The condition is referred to as a sequence because it progresses as a series of events during development in utero, beginning with underdevelopment of the jaw.

A whole team behind him

When Dylan was born, his doctor referred him to our craniofacial team and he’s been receiving care and making friends at CHoR ever since. He’s undergone three palate surgeries with Dr. Jennifer Rhodes, who continues to check up not only on Dylan, but his whole family. He also comes to our Fredericksburg Therapy Center weekly for speech therapy to help him work on his speech sounds and improve intelligibility so that his peers and adults can understand him.

Pierre Robin sequence can also impact feeding, breathing and hearing among other important functions. Thankfully, Dylan has a whole team behind him at CHoR! In addition to surgery and speech, he also sees dentistry, ENT, psychiatry, urology, genetics, gastroenterology, audiology and cardiology (for his pectus excavatum and heart murmur) every four to six months. He’s seen many others off and on over the last six years as well.

Specialized speech therapy, just for Dylan

Dylan has developed quite a fondness of his speech therapist, Meg Lico, as they’ve worked together regularly – and the feeling is mutual.

“Dylan is an absolute ball of energy. He always has a smile on his face and will work hard in therapy to overcome his challenges without question,” says Meg. “He’s also incredibly kind, empathetic and inquisitive. He likes to ask lots of questions about life and the surrounding environment. His positivity radiates!”

One of Dylan’s recent achievements has been eliminating his nasal emissions (sounds that accidentally escape through the nose when they should be moving through the mouth), which is a common challenge for kids who’ve had a cleft palate repair. He’s also made great progress with lingual elevation, or moving his tongue upward to the roof of his mouth, to produce the “L” sound.

Meg develops therapy activities to engage Dylan, keeping in mind his active and social personality – one of the many benefits of working with a therapist who is specially-trained in pediatrics. His favorite is riding a scooter down the clinic hallways, stopping at each corner to practice his target words. He also loves chatting with Meg and his rehab tech, Aeylla, to practice his sounds in conversation. Everyone enjoys the pretend pizzas Dylan makes for them during his breaks too!

A family of fans

Dylan continues to work on his “S” sounds as well as using his pacing strategies when speaking to slow down and be mindful about the sounds he’s producing. He gets lots of practice at home, interacting with his parents and two older brothers, Cody and Wyatt. His kind personality shines through with his family as well.

“Dylan loves to be a helper – or as he calls it, a ‘worker’ – chipping in to assist us with anything that needs to be done,” says Mom, Melissa.

According to Meg, Dylan’s parents give their all for him too.

“Dylan's family is absolutely wonderful. His mom continuously and tirelessly advocates for Dylan both in the health care setting and within the school system, which has benefitted him greatly over the years. Dad is committed to consistently bringing him to therapy sessions every week and is always willing to participate in discussions with me regarding progress at home,” says Meg. 

When Dylan is not working hard at therapy or helping out at home, you’ll probably find him playing with Legos, not only putting kits together according to the manual, but changing the designs to meet his ideas of what they should be. Batman and Nerf toys are other favorites, along with spending time outside practicing soccer or playing on the playground.

“Dylan has been through a lot, but through it all he is so happy and keeps a positive outlook. Our hope for him is that he will continue to be himself, be proud of how far he’s come and not change for anyone else – what makes him smile is what’s most important,” adds Melissa.

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