Brownwood News – There will be a BBQ fundraiser on Sunday, November 11th, at 11 a.m. at Advance Auto Parts in Brownwood to help little Brynlee Windham get a second surgery desperately needed.
According to a GoFundMe page set up for Brynlee, she was born with Sagittal Craniosynostosis, a birth defect that affects one in every 2,500 children. There is currently no known cause. Brynlee had a skull strip surgery at three months old followed by almost five months of helmet therapy to correct the problem.
However, after completing helmet therapy, the Saggital suture re-fused along with her right coronal suture. It is considered very rare for another suture to fuse after a corrective surgery for Craniosynostosis. According to her parents, the neurosurgeon who performed Brynlee’s first surgery has only seen four or five other cases like this in his entire 30 year career.
Brynlee’s brain continues to grow, but because the sutures are fused, her skull continues to be misshapen. Infants’ heads grow rapidly for the first year of their life and as Brynlee’s brain continues to grow, her skull isn’t allowing enough room to compensate. Her brain is currently growing up into her soft spot. Raised inter-cranial pressure, if not fixed, will cause brain damage.
Initially, the family’s insurance company denied funds for the surgery which costs over $40,000, due to Brynlee’s parent’s decision to switch to a Craniofacial surgeon who specializes in skulls and in rare cases like hers. Recently, however after speaking with insurance and Dr. Fearon’s office, the family is relieved to learn some funds may be available.
“I felt like I could breathe again. I felt joy in my heart. I felt happy,” Brynlee’s mother, Miranda, said. “The devil was trying to steal that joy, that happiness, all the goodness that has come out of Brynlee’s life and story.”
It is still unknown exactly how much the insurance company is going to pay and how much the family will be left to pay.
“It’s hard to sit and wait. It’s hard to be patient. It’s hard to know what we should do next. But we will continue to choose to walk by faith and not by sight so that the devil doesn’t get the satisfaction of stealing all the joy that has come from this journey,” Miranda said.
“This has consumed our lives this past year and we are ready to have our daughter happy and healthy,” Miranda said. “We would never ask for financial assistance but this is our daughter’s skull, brain, and quality of life we are talking about. Which is why we have chosen to switch to the craniofacial surgeon in Dallas. His name is Dr. Fearon and he has the best statistics in the state of Texas. Many families even travel from other countries to see him. His success rates, the fact that he doesn’t use plates and screws in the skull, his surgical technique, and his compassion for helping families is what sets him apart from others. Bryn is only 10 months old and has been through enough this year and we desperately want to get her the care she needs.”
To help Brynlee get the surgery she needs, stop by the BBQ Benefit to purchase a BBQ brisket sandwich served with chips and a drink for $8 per plate. For more information on how to help, call: 325-998-5189
