According to blogger AliceAnn Meyer, an unknown person used her beautiful son’s photo and created a meme comparing him to a pug. Little Jameson actually has Pfeiffer syndrome, a craniofacial syndrome that causes premature fusion of the skull. He has had two cranial vaults and four sets of tubes placed in his ears.
What is Pfeiffer syndrome?
Pfeiffer syndrome is a craniofacial syndrome that includes craniosynostosis (premature fusion of the skull). The best way I can explain it is that there was a genetic mutation on the gene that tells your tissues and bones when to start and stop growing. Some grew too much (fused skull sutures), and some not enough (mid-face hypoplasia).
As a result, Pfeiffer’s kids vary from one to the other. Because of the severity of the mid-face hypoplasia and cranial abnormalities some kids have more issues breathing, eating, seeing, and hearing than others. Some kids have just 2 cranial sutures fused, others have all of them fused. It all depends on the child. All of this determines what kind, and how many surgeries will be needed.
Jamesons story
Jameson was born 1.7.2012 with Pfeiffer syndrome Type I, a result of a rare genetic mutation that occurs 1 in every 100,000 births. This is his journey!
Pfeiffer syndrome affects the growth of the bones in the skull, hands, and feet in utero. Jameson was born with both of his coronal sutures fused, fusion in his PIP joints on his hands, his thumbs are wide and deviate out, and his feet mimic his hands. He has mid-face retrusion, making his eyes appear bigger. Jameson also has mild hearing loss.
Jameson is such a happy boy and a joy to be around. Other than his physical differences he is just like any other little boy! Nothing seems to hold him back, and he is quite the charmer 😉
Jameson has had one surgery to separate his fused cranial sutures, and will undergo his second one in just a few weeks. This won’t be the last surgery for Jameson, but despite that we still feel so lucky and blessed for everything that Jameson gives to our lives!
Thank you for following along with us on this journey! ♥
http://www.jamesonsjourney.com
Now, AliceAnn is fighting back with a post on her blog entitled, “This Is My Son Jameson, And No, You May Not Use His Photo.” Here’s what she writes:
Now that sweet picture has resurfaced and is circulating around the internet. Except, that the photo has been altered. Someone, somewhere, decided for who knows what reason, to take that picture and create a meme comparing my son to a pug. What compels a person to do such a thing I will never understand. There is no way for me to know who did this, but for every post and share of this meme I will do everything in my power to get it taken down.
Exactly one week ago I spent my Saturday night fighting an individual to remove my son’s photo from his Facebook page, where it had been liked 5,000 times and shared nearly 3,000. It was no easy feat and took 100’s, maybe even 1,000’s of reports being submitted, an army of people fighting with me, and a good 24 hours before Facebook removed it from his page. Success!! Only to find it on another site, with 1,000’s more shares and likes. My heart literally sank. But, we fought on
