Hi my name is Barbara Thomson and our granddaughter

Alivia was diagnosed and started her fight at 3 years old with Perry Romberg Syndrome, a rare progressive disease that has caused deterioration of half of her face, a sinking eye socket, the total breakdown of the left side of her nose, and uveitis, an inflammatory eye disease.

For seven years Alivia's amazing team of specialists at Boston Children's Hospital treated her with low-dose Chemotherapy, trying their best to slow the progression of the disease. Eventually, they began to worry about the long-term effects the medication could have on her organs and overall health. At 10 years old they decided to stop treatment but sadly, the disease was still progressing.

During this difficult time, Alivia's mother turned to an online community of families who either has Parry Romberg syndrome themselves or were parents of children living with it. Through that group, she connected with a surgeon in Wisconsin who specialized in treating PRS Surgically.

Alivia underwent her first 3 surgeries in Wisconsin, but insurance denied coverage, even after several attempts. The total cost of those 3 surgeries came to nearly 100,000 dollars, and our family was only able to manage it with the help and kindness of or friends, family and community members who supported our fundraising efforts. We were beyond grateful.

After many rounds of advocacy, insurance finally approved the next 2 surgeries, which we were thankful for. We thought we might finally be through the hardest part but unfortunately, we now find ourselves facing another obstacle.

Alivia's surgeon has since moved from Wisconsin to New York City, where he continues to practice. New York State does not accept their insurance for what they consider a non-emergency medical treatment.

Once again we are reaching out to friends, family, and community for help. Alivia has been through so much, and she continues to handle everything with strength and grace. We want to make sure she can continue getting the care she needs without the added worry of financial strain.

Any amount, big or small, helps more than you know. From the bottom of our hearts, thank you for reading, for sharing, and for supporting Alivia and our family through this journey.

With Love and Gratitude,

Alivia's family