Hey friends, family, and community. As most of you know, our daughter Bristol was recently diagnosed with Branchiootorenal- a very rare genetic condition (1 in 40,000) which affects the neck, ears, and kidneys. We are thankful finally for a diagnosis after searching for the reason to her deafness since she was born. Most of you also know we have a handsome 4 month old boy named Baylor who more than likely has the same genetic condition, and while he has hearing, he has a multicystic kidney that is dying. With this being said, I am only able to work 2 days a week due to Bristol and Baylor having so many appointments, especially Bristol with speech and occupational therapy as well as ASL classes multiple times weekly. We have become frequent visitors of CHOA, and while we are so thankful for Ronald McDonald house and their accommodations, we have fallen extremely behind on bills. Dusty is the sole provider as a farrier and works most days until late in the evening. It just is not enough with him having to visit Atlanta frequently with us since sometimes, both kids have appointments in two different places. We are reaching out to the community to help in any way possible. Bristol is scheduled to have 5 surgeries on December 3rd, and possibly more depending on what further issues they find once she visits the ENT again after her BOR diagnosis. Bristol has become a candidate for BAHA hearing devices, which will conduct sound to her through her skull bones moreso than her ear, since she has recurring preauriclear pits that prevent her from wearing standard hearing aids. Currently the BAHA devices have been denied by insurance with a letter of medical necessity, so we have appealed their decision because we believe Bristol deserves to hear the world too. We have climbed several hills to get here, but now we are sliding back down due to financial burden and we owe this to our children. We thank you from the bottom of our hearts for reading our story and appreciate any help just as much.
Love
The Mewborns
Dusty, Kate, Bristol & Baylor
