Angelica's Journey

Hello, I am Angelica's Grandma, Annette, and I am fundraising funds to help her with her medical journey. Angelica was born April 16, 2023. Her parents are Brittany & James Dobry, and she has a big sister named Cassidy who is 3 years old. They live in Abrams Wisconsin and are a part of the Pulaski Community School District.

Angelica was born with "Port Wine" birthmarks on the left side of her face, up the left side of her head, down her neck and upper shoulder, down her left arm and on her lower back. Twenty five percent of her body is covered with these port wine stain birthmarks (rare). Most babies born with these birthmarks, it is just a cosmetic issue and is limited to just the face, but Angelica has more of them. However, in rare cases, they can have Sturge-Weber Syndrome. This is what Angelica has been diagnosed with. She also has epilepsy. These birthmarks can be treated with laser surgery. She has had two treatments on her face so far, and the results are amazing. All of the birthmarks will have to be treated because over time, the skin will become bumpy and crusty. So, many treatments are in her future. Her eye will have to be done when she is a toddler because they will have to put her under, and put a contact in her eye to protect it.

Sturge-Weber syndrome (SWS) is a rare, neurological disorder present at birth and characterized by a port-wine stain birthmark on the forehead and upper eyelid on one side of the face. The birthmark can vary in color from light pink to deep purple and is caused by an overabundance of capillaries (small blood vessels) around the trigeminal nerve just beneath the surface of the face.

Sturge-Weber syndrome is also accompanied by abnormal blood vessels on the brain's surface and the loss of tissue (atrophy) with deposits of calcium (calcification) in the cerebral cortex of the brain on the same side as the birthmark. Sturge-Weber syndrome rarely affects other body organs.

Neurological symptoms may include: Seizures that begin in infancy and may worsen with age. Convulsions usually happen on the side of the body opposite the birthmark and vary in severity, Intermittent or permanent muscle weakness, Developmental delays and cognitive impairment, Glaucoma (increased pressure within the eye) at birth or later, and migraines.

A lot of testing, MRI's, and EEG's, and eye appointments were done early on. Their findings found the left side of her brain has tissue damage and she is high risk for seizures. At that time, they put her on seizure medications. On August 19th, 2023, our lives changed forever. Angelica began a series of seizures that could not be controlled with medication. She was at Childrens Hospital in Milwaukee for 6 days. In order to get the seizures under control, they had to do what is called a versed drip, which stops all brain activity. Then they administered a cocktail of medications to keep them from happening. She now has to take 3 viles of medications, twice daily. It is not a fun thing to do. The doctors informed her parents that this medication will fail too. The best option for her to live a normal life would be to disconnect the entire left side of her brain. She will lose the use of her right hand and ankle. A brace can be put on her ankle to help her walk. Of course, complications can arise. No guarantees. But the doctor said there is an 85 to 90 percent success rate. She may be able to come off from the seizure meds too. The right side of her brain is normal and healthy. The hope is the right side will compensate for the left side. She will have life long physical, occupational and speech therapy.

Her mother, Brittany, was off three months for maternity leave. Her father James, used his vacation for that time off too. Brittany is out of vacation days and FMLA. This surgery will be at least one week in the hospital, could be longer. It just depends on how things go. Plus there may be time to recover at home. There will be many trips to Childrens Hospital in Milwaukee and many appointments to follow. Not everything is covered by insurance. Being off without pay, is going to be a struggle for their family.

If you can help Angelica and her family along her medical journey, it would be so much appreciated. I am working on setting up a website for her and a Facebook page. Once they are available, I will put that information on here. A benefit for the family will be done at a later date, pending Angelica's surgery. Right now, the tentative date for surgery is January 15th, 2024.