Jace’s Face Living With Parry Romberg Syndrome

Thank you for taking the time to read about our son Jace. He is 5 1/2 years old right now, but at 2 1/2 years old his left side of his face started to change.  He had some hyperpigmentation underneath his left eye and left side of his neck, his left side of his skull felt distorted compared to his right side. He had a bald spot only on the left of his head, grey hairs behind his left ear as well as hypo pigments on his left side of his back. After 4 months of different doctors and specialists he was diagnosed with Parry Romberg Syndrome. This syndrome affects 1:250,000 people and his very rare and often overlaps with other autoimmune conditions. Very few doctors have ever treated or know about this syndrome. 6 months after his diagnosis he was referred to a Rheumatologist in Austin and then was also diagnosed with Linear Scleroderma, Morphea and Juvenile Seronegative Polyarthritis. He was started on weekly methotrexate injections, he would take oral steroids daily and IV steroids every 2 weeks.  Even after these medications Jace’s body continued to attack his face. The soft tissue, cartilage and bone can all deteriorate and did in some places. They added another monthly IV medication called Orencia. After this combination of meds we started to see some changes and what appeared to be the syndrome slowing done. But the damage already had been done. There is one plastic surgeon in the U.S with surgical experience with over 250 Parry Romberg patients. We have traveled everywhere to make sure Jace is in the most experienced hands in every field to treat him. The free flap surgery consists of harvesting fat and blood vessels from his back to his face. We are doing all of this in the hopes to stop the syndrome as well as give Jace a more symmetrical appearance.  He’s had one surgery in Madison, Wisconsin on December 23, 2020 but he had so much atrophy they weren’t able to transfer enough tissue to rebuild his face. So we will be having another surgery July 7, 2021 to repeat the previous surgery. Then in 6 months he will need another revision.  Even after this Jace will have to continue these medications for the rest of his life. He will still need yearly MRI’s to monitor his brain and ensure his brain isn’t affected by the syndrome. If the syndrome flares up again he can lose his vision, hearing, start getting seizures as well loose his teeth and bone. He will need more corrective surgery when he’s a young adult to fix all the bone that was damaged. We honestly don’t know how many more surgeries he will need. We don’t qualify for assistance because Jace isn’t cognitively affected. We do have commercial medical insurance, but as you can imagine they don’t cover everything. Just between copays and deductibles is a big expense. Money raised goes to his medical bills, travel expenses, food and living expenses. We appreciate anything you can donate. It has definitely been a rough 2 years since we started this journey and we still have a lifetime to go.  If you would like to follow his journey on Facebook.

https://www.facebook.com/JacePRS/Thank you again for taking the time to learn about Jace.