When parents are expecting, they patiently wait nine months to see their baby for the first time. Unfortunately, some babies are born with problems that modern medical technology cannot detect with ultrasounds. This is what happened when Natasha and her husband first met their son Raedyn. Unfortunately, their adorable little baby was born with Pfeiffer syndrome. Regardless of how cruel people can be, Natasha says she will continue to publish images of her daughter and raise awareness about the syndrome. Raedyn, she hopes, will teach people to be more accepting and nice to others who appear different.

Woman Refuses to Quit Blogging About Her Pfeiffer Syndrome Son Online
Natasha, a three-year-old American mother, has started speaking out on TikTok against individuals who tell her she shouldn’t upload images of her one-year-old son Raedyn. Raedyn was born suddenly with Pfeiffer syndrome, which has resulted in skull and face malformations. As a result, he appears different than normal babies and faces much more health issues. Natasha says she will continue to share her son’s story despite the negative remarks she has received both online and in person. She hopes that by continuing to post about him, she would raise awareness about his illness and encourage people to be compassionate.

What Exactly Is Pfeiffer Syndrome?
Pfeiffer Syndrome is a hereditary illness that affects the face’s bones, teeth, and soft tissues. It affects around one out of every 50,000 babies. It can be caused by a mutation in any of numerous genes, however it is most usually caused by FGFR2 or FGFR3 mutations. These genes are in charge of assisting cells in communicating with one another throughout development. They can cause difficulties with your child’s bones and teeth if they don’t work properly.

Pfeiffer syndrome is a hereditary condition that runs in families. It is a rare disorder that can affect any ethnic group. The syndrome is named after the German physician Hans Pfeiffer, who reported it for the first time in 1956. Pfeiffer syndrome can appear alone or in combination with other genetic illnesses such as homozygous achondroplasia, thanatophoric dysplasia, and diastrophic dwarfism. Doctors struggle to diagnose the ailment because it is rare and there are no particular tests to identify it. If your child has Pfeiffer syndrome, there are several things you may do to help enhance their quality of life.

Pfeiffer Syndrome Symptoms
Pfeiffer syndrome symptoms vary depending on which gene is damaged and how severe the mutation is. Some children experience modest symptoms, while others experience more severe symptoms such as hearing loss or vision issues. Children with Pfeiffer syndrome may also experience delayed growth and development because their skulls are malformed and do not allow for brain expansion or correct development of face muscles essential for proper chewing of food (such as muscles used for chewing).

Therapy Alternatives
There are currently no treatments available to reverse the damage caused by this condition once it has occurred; however, there are treatments available to help improve the quality of life for children with pfeiffer syndrome by improving bone health so that fractures do not occur more frequently than usual (for example, when children with pfeiffer syndrome are bumped into or fall), as well as improving hearing, vision, and dental health.

Simply attempting to live as normally as possible.
Natasha and her family have set up a GoFundMe campaign to raise funds to help meet Raedyn’s high medical bills. On the page, they wrote about Raedyn and the difficulties he and his family have experienced as they manage his condition:

Our precious son was born with a very unusual genetic condition that has impacted him from head to toe. He came out fighting and has demonstrated every day how much he wants to be here with us, therefore we have also battled for him! Raedyn has some significant changes in his appearance, as many others have noted, but that’s only the tip of the iceberg. On the inside, our adorable little son has faced far more terrible struggles. Raedyn has had ten surgeries thus far, and as previously said, he will require several more in the coming years. Raedyn’s condition will not be “cured” with surgery; we are simply pointing him in the proper path so that he can thrive in his gorgeous little body!

Much of his future is still unknown, so we take things day by day and hope for the best. He will require numerous therapy during his first few years of life. He will need to learn a method of communication, whether it is sign language or another form of electronic communication via a computer or gadget. He will require physical therapy to learn how to utilize his limbs in a more sustainable manner, as well as assistive devices like as customized chairs, strollers, walkers, and hearing aids. Raedyn will always require “additional”” accoutrements,” but that’s okay; we’re just learning how to help him with that! Our family’s life will never be “normal,” and I believe that has been the most difficult aspect for us all; we have worked so hard to construct our lives and have the things we have.

To be close to Raedyn’s hospital, the family had to relocate from Cheyenne to Denver, a more expensive city. Natasha is now his full-time nurse, while her husband drives daily between Cheyenne and Denver for work. Their oldest daughter has remained in Cheyenne to continue her education with her friends and classmates, while their other son will begin school for the first time in Denver. Natasha only wishes for people to be kind to her son and their family, both in person and online.