Angelica's Journey: Raising Awareness and Funds for Sturge-Weber Syndrome
Angelica, a 7-month-old baby girl, was born with a rare condition called Sturge-Weber Syndrome (SWS), which affects the skin and nervous system. She has a port-wine stain birthmark on her face, upper neck, left arm, and lower back. Additionally, she has leptomeningeal angiomas on both sides of her brain, which is very rare. SWS symptoms can be seizures, muscle weakness, glaucoma, developmental, and cognitive delays.
Angelica has been diagnosed with epilepsy and has been hospitalized twice for uncontrollable seizures. Her seizures last an average of 20 minutes with the longest one being 49 minutes. She has two different types of epilepsy seizures. The left side of her brain has focal seizures, the right side has combined generalized with tonic-clonic seizures. So, in other words, she has two epileptic brains. This is extremely rare, and hard to treat. She has had two laser treatments on her face for the port-wine stain. 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 not only a financial strain on the family, and emotional one as well.
To raise awareness of SWS and support Angelica's family, a fundraiser will be held on Saturday, March 2nd, 2024 at Scolly’s Hometown Pub located at 140W. Pulaski St. in Pulaski WI from 11am to 4 pm. The event will include a silent auction, bucket raffles, food, and music provided by Farewell Friday. If you are able to donate for the benefit, Items for the silent auction, a basket for the raffles, food for the lunch or monetary donation, please contact Annette at 920-737-4922 or scrapbooknut@new.rr.com.
Angelica's journey is not an easy one, but she has the love and support of her family and community. Let's come together to raise awareness and funds for Sturge-Weber Syndrome and support Angelica's family in their time of need.