Written by Jessica Musler
Jameson is from San Antonio, Texas, where he lives with his four brothers! He has been diagnosed with Pfeiffer Syndrome, a craniofacial condition that affects bone growth. Jameson loves gardening, riding his bike, listening to music, and camping with his family! Here is Jameson’s mom, AliceAnn, talking about him and their experiences together.
Jameson is six years old; he is the second oldest of five boys. He loves music and dancing. He loves to tinker, inspect, take apart and put back together anything he can. He is independent, smart, vivacious, funny, and full of life. If all I ever told you were the things Jameson does and loves you would think he is the same as every other six-year-old boy. However, the second you saw Jameson you would probably immediately wonder, “what’s wrong with him?”.
I’ll be the first to tell you that nothing is wrong with him.
He was, however, born with a rare craniofacial syndrome called Pfeiffer syndrome. You’d probably squint your eyes and say you’ve never heard of it and have no idea what it actually means, and I wouldn’t be surprised, because I didn’t either. But you’d be in luck, because I would happily tell you all about Pfeiffer syndrome!
Pfeiffer syndrome if a craniofacial syndrome that affects the growth and development of various bone and tissue throughout the body. 1 in 100,000; those are the odds of having a child with Pfeiffer syndrome. Mainly the skull, face, hands, and feet are affected, but the rest of the body is fair game. Because the skull and facial bones are involved his appearance is different from most of the world, and that’s what make people stop and stare.
Year after year he has MRI’s and intense eye exams to check for intracranial pressure. If/when there is intracranial pressure neuro and plastic surgeons have to go in and release the skull sutures, so his brain can continue to grow and develop. He has to have yearly sleep studies to check his breathing because he is prone to sleep apnea. These are the major issues for us, but there are lots of little issues that arise because of the syndrome. But, this gives you the gist of what our biggest concerns are.
I will see the wonder in your eyes as I explain, and I will quickly add that it’s a random, spontaneous mutation that causes Pfeiffer syndrome. I know the thought of, “What happened?”, crosses your mind, because I had the same question. But, there is nothing anyone did or didn’t do to cause it to happen – it just did.
And then, I would most importantly tell you that he may look different on the outside, but he is exactly the same as every other little boy in the inside.
I could tell you that the medical complexity of Pfeiffer syndrome is daunting because it 100% is. But honestly the social aspect of simply looking different has torn my heart apart more than I could ever imagine. Watching your child get made fun of, watching children scream, say mean things, and run away because of the way he looks is gut wrenching. It’s not fair, and if there’s anything in the world I could change it would be this. We have created a society that deems one’s appearance as “wrong” and “right”. Movie villains have scars, they’re disfigured and “ugly”. But in the real world there are many beautiful people created perfectly that look exactly like these fictitious villains; and as a result, we’ve sent the false message to children that different and scarred is bad, mean, and ugly.
Before Jameson was born I had never heard of craniofacial syndromes, let alone Pfeiffer syndrome. And we did not know anything was out of the ordinary before he was born. In the moments, days, and weeks, after his birth we were in a daze. It was confusing, and scary. I didn’t know what the road ahead held. I didn’t know what kind of life we’d have.
Here we are six years later, multiple surgeries, and I proudly exclaim that we have an extraordinary child, and I am indeed the lucky one to be a part of his life. The doctors appointments, and exams, and follow-ups may not be normal to most, it is our normal, and he is every bit a normal boy.
He is my inspiration.
He has exposed to the core what this life is really, truly about, and he’s a shining example for the world.
Not only is he a teacher of kindness; it is easy for kids (and adults) to be mean to him simply because he looks different. But, he is a teacher of self-love and resiliency. I watch him love life and love himself without cause. He doesn’t care how he looks, and it’s not stopping him from living and loving his life to the fullest. He has endured more surgeries (major and minor) than most of us ever will in our entire life. I watch him bounce back and embrace his life as a little boy who want to play and run and learn.
There have been extremely trying times over the years. It is heart wrenching to send your child into the operating room over and over. It knocks the wind right out of you seeing him come back after his skull was cut in half from ear to ear time and again. It’s utterly agonizing watching him struggle to breathe because the bones in his face didn’t grow far enough.
During these times our family has been there to embrace us and carry us through it all, and without them I don’t know how we would have gotten through.
There have also been extremely pleasant, and life-altering times through it all. The resiliency and joy Jameson has is paramount. I have never seen anything like it in my life. I have watched him come out of cranial surgery walking and smiling and giggling just days later.
I have had my faith in humanity restored time and time again as people from all over the world have sent their love and support to Jameson and our family.
The things I hope that people take away most from meeting Jameson is that:
- Do not look at a person from a point of judgement. Curiosity is different from judgement and curiosity is always welcomed. Curiosity means you’re interested, and probably also means you care. Judgement means you think they are less or incapable of thinking, feeling, or doing all the things you do.
- Children born with differences were born perfectly. There is nothing wrong with the way they look; different, maybe, but not wrong.
- Take time to see the amazing spirit within (all of us). If the world could change their ideology about what makes a person beautiful and simply enjoy the experiences and the precious moments between us as humans, love and kindness would be effortless.
- Pfeiffer syndrome. If you remember what Pfeiffer syndrome is as the days of your life continue I will be forever grateful. I don’t know if it would have made a difference for me if I had heard of Pfeiffer syndrome before Jameson, but maybe I can hope that one day a parent who has a child with Pfeiffer syndrome can say they had heard of it before.
1) Q: What is your biggest inspiration?
A: My biggest inspiration with Pfeifer syndrome is Jameson. He does all the hard work, and as hard as it can be to watch him go through it he still has a smile on his face and love to give at the end of each day, it's truly inspirational to witness.
2) Q: Who is the person (or people) who has gotten you through the most?
A: Our family had been our rock. They have supported us through each major hurdle, without them it wouldn't have been so seamless.
3) Q: While your child has been going through this condition, what has been the most unexpected and rewarding thing you have experienced?
A: Through each difficult experience with the public, every time people have used him as a joke or made cruel comments, there have been quadruple the people to come to his defense, stand up for him and fight for him. Each time it restores our faith in humanity.