Jaxon and Priya’s Experiences of Living with Craniofacial Disorders
In many ways, Jaxon Rosson is an ordinary 11-year-old boy. He enjoys his 6th grade classmates and teachers at Menlo Primary School, getting on Mr. Ralph (Tucker’s) bus and playing outside. He has a vivid imagination referring to himself as Auggie Pullman from the book “Wonder”. Her great energy (and her ability to switch glasses at a record rate) blows her parents, Kevin and Meredith Rosson.
However, Jaxon is far from ordinary. He suffers from a horrific set of conditions known collectively as childhood craniofacial disorders. Its specific disorders are Pierre Robin syndrome (pronounced Robane) with cleft palate and Moebius syndrome (paralysis and weakness of the facial nerves).
During his short life, Jaxon underwent 17 surgeries. They include cleft palate repair, G tube placement and replacement, ear tube insertion, multiple dental surgeries, pharyngeal flap repair, bilateral ptosis, and strabismus repair in both eyes. He faces difficulty with his floating eyes and overactive tear ducts (which is actually a good thing for him since he can’t blink or close his eyes). He also suffers from hearing loss, nasal passages that are half the size they should be (resulting in difficulty breathing), as well as asthma and sleep apnea.
He will most likely need nasal reconstruction surgery when he is older and possibly jaw distraction and should begin the orthodontic phase of his treatment plan within the next 6 months.
A craniofacial difference (often medically called a disorder) refers to an abnormality of the face and / or head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involve soft tissue and bone. A craniofacial condition can include disfigurement caused by a birth defect, disease, or trauma.
According to https://ccakids.org/syndromes.html, there are over 2 dozen different disorders that children like Jaxon suffer from. Craniofacial disorders are horrific not only in the health issues they cause from birth, but also in the fact that they affect the physical appearance of children who don’t understand why they are different.
These children spend an enormous amount of time in hospitals having surgeries. The costs are astronomical for parents both financially and emotionally. Battles are fought daily and small victories are celebrated. Although life is difficult for children like Jaxon, they still have the ability to lead normal lives thanks to others leading the way.
Like Priya… ..
Priya Marie Jones is a 21 year old CNA (Certified Practical Nurse) who is currently working in the medical records field and is continuing her nursing education at Shorter University. She is the daughter of Chattooga High School graduate Roger and Editha Jones, and lives her life with energy rarely seen.
Priya was born with a bent nose, cleft lip and palate. She was also deaf and blind in one eye. Between 3 and 5 years old, she underwent surgeries (in India) to partially repair her cleft lip and palate, as well as the pharyngeal flap. She then underwent a bone graft at the age of 14 and spent many hours in speech therapy.
Priya was completely honest and straightforward when asked about the challenges she has faced in her life.
“My challenges were not being able to articulate the words properly due to my poor hearing and my cleft lip and palate. Seeing one eye made it so hard to make up for it. I had to learn to lip read and accept my accommodations at school. And I also had to realize that I was different from my peers.
Priya refuses to view craniofacial syndrome as a limiting factor in her life. She made up for her difficulties with an extreme amount of effort and hard work and a “never give up” attitude. She was supported and urged to do her best by her parents as well as many adults (like Misty McQuese, a health care teacher at Chattooga High School).
Priya even got her driver’s license and enjoys the typical life of a young woman in her twenties.
For those who don’t know, September is Craniofacial Awareness Month. The stories of Jaxon and Priya are no doubt special, but there are many other young people who struggle with this disorder on a daily basis as well. They are suffering from things that most people cannot even imagine. Their lives consist of many doctor’s appointments, surgeries, and therapy sessions. Yet they continue to fight for a chance to lead a normal life.
When Kevin Rosson talks about his son, he constantly uses the word “hero”. Not all heroes wear capes or funny costumes. Some of them dress up as determined young NACs who refuse to give up and Grade 6 boys who just want people to be nice.
Real heroes make the world a better place and enrich the lives of those they come into contact with.
By this definition, Priya and Jaxon are indeed heroes …….