Dylan's CVR
Donation protected
For anyone unfamiliar with Dylan's story, I am happy to fill you in.
When Dylan was born, her head was long and narrow. Initially we though that it was just from birth, because... well... newborns can be kind of funky looking. Unfortunately, her head never changed shape. At 2.5 weeks old, she was diagnosed with sagittal craniosynostosis, meaning her skull fused prematurely which left limited space for her brain to grow.
We opted to have her undergo an endoscopic strip craniectomy at Mayo Clinic, followed by 12 months of helmet therapy. We thought all was going great until her 12 month post op appointment, where we were recommended to seek a second opinion on her irregularities on her skull.
We found a wonderful surgeon who is in Dallas, TX (unfortunately there are no remotely local hospitals with a pediatric craniofacial team), who was able to tell us that her head shape is considered uncorrected craniosynostosis and that she has what he believes is vertex bulge, where her brain is pushing her skull outward. Because of this, she needs to undergo a cranial vault reconstruction. CVR is basically where her surgeons will make an ear to ear incision, remove her skull, remodel it, and put it back. She is scheduled for CVR on May 8th.
I started this fundraiser to help with the cost of the hefty booking fee required with her craniofacial team, along with expenses for travel and time off of work. More importantly than the contributions, we would absolutely love to see everyone wear/use their Dylan gear in May when she has her CVR. You can find #teamdylan gear here: https://team-dylan.itemorder.com/sale
Thank you so much to Shirtworx here in Williston for graciously helping us do this, and thank you to any and everyone who shows their support to our little girl. Thank you for being her village.
#craniosynostosis
#craniowarrior
#teamdylan
#wearethevillage
When Dylan was born, her head was long and narrow. Initially we though that it was just from birth, because... well... newborns can be kind of funky looking. Unfortunately, her head never changed shape. At 2.5 weeks old, she was diagnosed with sagittal craniosynostosis, meaning her skull fused prematurely which left limited space for her brain to grow.
We opted to have her undergo an endoscopic strip craniectomy at Mayo Clinic, followed by 12 months of helmet therapy. We thought all was going great until her 12 month post op appointment, where we were recommended to seek a second opinion on her irregularities on her skull.
We found a wonderful surgeon who is in Dallas, TX (unfortunately there are no remotely local hospitals with a pediatric craniofacial team), who was able to tell us that her head shape is considered uncorrected craniosynostosis and that she has what he believes is vertex bulge, where her brain is pushing her skull outward. Because of this, she needs to undergo a cranial vault reconstruction. CVR is basically where her surgeons will make an ear to ear incision, remove her skull, remodel it, and put it back. She is scheduled for CVR on May 8th.
I started this fundraiser to help with the cost of the hefty booking fee required with her craniofacial team, along with expenses for travel and time off of work. More importantly than the contributions, we would absolutely love to see everyone wear/use their Dylan gear in May when she has her CVR. You can find #teamdylan gear here: https://team-dylan.itemorder.com/sale
Thank you so much to Shirtworx here in Williston for graciously helping us do this, and thank you to any and everyone who shows their support to our little girl. Thank you for being her village.
#craniosynostosis
#craniowarrior
#teamdylan
#wearethevillage
Organizer
Sammi Mae Tuter
Organizer
Williston, ND