The story of Brynlee
Brynlee was was born six weeks early & spent 19 days in the NICU. She underwent surgery for a duodenal atresia within her first 24 hours of life. Throughout her first year, she met many new doctors, nurses, & specialists. After several rounds of genetic testing, Brynlee finally received a medical diagnosis for Beckwith Wiedemann Syndrome. BWS is a rare genetic disorder commonly characterized by overgrowth & affects approximately 1 in 11,000 births. Brynlee just recently underwent tongue reduction surgery due to her significant macroglossia & has had an amazing recovery. She is required to undergo bloodwork & abdominal ultrasounds every three months until the age of 8 (age 4 for bloodwork), due to carrying a higher risk of certain childhood cancers. She is also required to have a yearly MRCP due to having a duplicate pancreatic duct, which is also very rare. Aside from having BWS & a few other conditions, Brynlee is just your typical happy & curious 16 month old child. She won’t let any diagnosis hold her back from loving the life she has been given!
For more information about Beckwith Wiedemann Syndrome, please visit: https://www.beckwithwiedemann.org/about-bws