Elvin and Cindy Angulo
Vera fights for a CURE
Fundraising for CURE Epilepsy
Story
RSVP here for the annual CURE Benefit Gala which will include a special feature interview with our family about Sturge Weber Syndrome & epilepsy as well as video footage of Vera playing and doing her therapy exercises with us. https://www.cureepilepsy.org/event_type/unite-to-cure-epilepsy/
Vera's Story
When Vera was born she didn’t cry right away. She peacefully looked around until the nurses cleaned her up, then she wailed. We immediately saw the portwine stain across the right side of her face. We thought it was bruising from the birth. Doctors came in, they took her for a few tests. Her right eye was so large & hazy, it was blue. Five days after her birth she was diagnosed with Sturge Weber Syndrome. Having the portwine stain birthmark & the glaucoma confirmed it. 2 weeks later we took her for an MRI which confirmed the brain damage: motor delays, left-side hemiparesis (muscle weakness), risk of epilepsy, no left-side peripheral vision in either eye & cerebral palsy. At 3 months old she started having hundreds of seizures a day, tonic seizures, confirming her epilepsy. At 4 months old she had her first eye surgery for the glaucoma. At 6 months old she was diagnosed with infantile spasms. At 11 months old she learned to sit up!! At 14 months old she started having focal impaired seizures. She was unresponsive for 40 minutes. At 16 months old she started standing up on her own!!! At 18 months old she blew our minds & took her first steps!!!! In September, she will have another eye surgery.
You get the point. Sturge Weber Syndrome is an unpredictable, frustrating beast of a condition. It is chronic, there is no cure. But we can & do treat the symptoms. We have laser treatments for the portwine stain to have it removed every 3-4 weeks (part of it is over her right eye & can close the eye shut if we don’t remove it). We can smell her skin burning after the laser treatments, it's such an awful process. We see a glaucoma specialist every 3 months with eye exams under anesthesia every 6 months, and a vision specialist every 4-6 months. We see an epileptologist / neurologist every 3 months & schedule routine EEGs as needed. We have had 5 hospitalizations so far, most lasting 6 nights each time. We have physical & occupational therapy 4x a week (virtually since March 2020) & vision therapy once a month. She'll be evaluated for speech therapy soon. It is a lot & we both work full-time. We figure it out just like any parent would!
Sturge Weber Syndrome is such a painful condition. Our baby girl has been under anesthesia more than both of us combined and she’s only 22 months old. She has worked so hard in therapy for her to complete basic functions in her day to day life. Every seizure takes her back developmentally. So she has to keep re-learning things. Epilepsy sucks. SWS sucks. We pray that we can find a cure soon & that no other child will ever have to go through what Vera does. We’ve met a lot of parents over the last year since our last fundraiser for Vera and we’ve seen kiddos with epilepsy in far worse conditions. It makes me sick to my stomach.
If you can, please donate to help us find that cure. If not, please share the link and promote this cause. Medicine is only masking the condition and Vera is on her last medicine attempt before she needs brain surgery which would remove good cells along with the bad. This would mean a loss of cognitive and physical function on the left side of her body. In addition, the anti-epileptic Vera is on is used to treat bi-polar disorder, which Vera doesn’t have. But it’s the only thing that has stopped her seizures. So this medicine isn’t an ideal remedy long-term.
Advocating is hard. It’s not fun for us to blast Vera’s condition all over the internet. We do it because we need to drive awareness and find a cure. She’s doing her part fighting through all the odds. We’re doing our part to find a cure. 
Your donation will go a long way in funding research for a cure for epilepsy. Thank you so much for your support!
RSVP here for the annual CURE Benefit Gala which will include a special feature interview with our family about Sturge Weber Syndrome & epilepsy as well as video footage of Vera playing and doing her therapy exercises with us. https://www.cureepilepsy.org/event_type/unite-to-cure-epilepsy/