Life with Parkes Weber syndrome: Grayson’s world

03/01/2025

Sweet gray got his first haircut yesterday!

02/19/2025

Hey everyone if you could donate or even share this go fund me for Miguelito it’d be appreciated! Miguelito was also born with Parkes Weber Syndrome and has gone through some pretty tough surgery’s at such a young age! As we know insurance companies don’t like to cover such expensive surgeries which causes families like his and ours a lot of financial difficulties! Anything helps big or small.

Dear Friends, Family and Community, Meet Miguelito, the sweetest, Kindergartner with… Yanni Paz needs your support for Support Miguelito's Urgent Surgery

01/08/2025

Hello everyone, I am providing an update on Grayson's condition as several mothers have recently contacted me regarding their children receiving the same diagnosis. To address some frequently asked questions, Grayson was born with one leg significantly larger than the other, which was not detected during the ultrasound, prompting a referral to a Children's Hospital in Atlanta for proper diagnosis. A skin punch biopsy was performed, and the results confirmed the diagnosis. Grayson is able to walk and experiences minimal pain in his leg, unless he develops an infection. Over the past year, he has had a few infections, but we are hopeful that a trial medication will prevent future occurrences. He wears specialized shoes prescribed by his orthopedic doctor and a compression garment to aid in lymphatic drainage. Grayson also sees a cardiologist, who initially monitored him every three months, but has now extended the follow-up appointments to every six to twelve months as his heart has returned to normal. Despite his condition, Grayson remains a happy and playful child, and I hope this information is helpful in answering your questions. Please feel free to reach out if you have any further questions, and I will do my best to answer questions as this is all new to me as well!