On Saturday, March 2nd, 2024, we will host a fundraiser for Angelica at Scolly’s Hometown Pub in Pulaski, Wisconsin. Please join us in person for lunch, Silent auctions, basket raffles, 50/50 raffles, bake sale, live music Farewell Friday and to meet Angelica’s family and provide support for them as they embark on an unknown journey.
Meet the Dobry Family. Brittany & James are the parents to Cassidy who is 3 and Angelica who is now 11 months old. Angelica was born on April 16, 2023. She was born with an extremely rare condition called Sturge-Weber Syndrome. Sturge-Weber syndrome (SWS) is a rare disorder affecting the skin and nervous system. Babies with SWS are born with a birthmark on their face known as a port-wine stain. Angelica also has the birthmarks on her upper neck, down her left arm and her lower back as well. Port-wine birthmarks are caused by enlarged blood vessels right underneath the skin. Babies with Sturge-Weber syndrome also have clusters of abnormal blood vessels between the layers of tissue that cover the brain and spine known as leptomeningeal angiomas. She has this on both sides of her brain. Other symptoms of SWS may include seizures, glaucoma, muscle weakness, developmental and cognitive delays. SWS is caused by a genetic change in the GNAQ gene. The genetic change is not inherited but occurs by chance in cells of the developing embryo. Angelica has Sturge-weber on both sides of her brain which is even more rare.
Angelica also has been diagnosed with Epilepsy as well. She has been hospitalized several times for uncontrollable seizures. The first time when she was 4 months old and then every two months after that, Several medications have been prescribed to help control the seizures, but she seems to break through the medications. As of right now, her medications are working and she hasn’t had a seizure since her last hospitalization. Her seizures last an average of 20 minutes with the longest one being 50 minutes. Her seizures also affected her breathing and it caused her to go into respiratory arrest. She has had two laser treatments on her face for the port wine stain. It has lightened up the birthmark substantially.
There will be many trips to Children’s Hospital of Wisconsin to keep her seizures under control and for other treatments. Her parents have missed work due to many appointments and her hospitalizations where her stays were 1 - 2 weeks. This has put a financial strain on the family and an emotional strain too. Her fight is our fight. She may face many challenges along her journey, but we will be there for her.
Please join us on Saturday, March 2nd, 2024 at Scolly’s Hometown Pub located at 149W. Pulaski St. in Pulaski WI at 11am - 4pm. There will be a silent auction, bucket raffles, 50/50 raffle, bake sale, food and live music! If you are able to donate for the benefit, please contact Annette at 920-737-4922 or scrapbooknut@new.rr.com.
