Welcome to Vera's Birthday Fundraiser!
Vera's 1st Birthday Fundraiser
Our daughter, Vera Devi Angulo, was born with a very rare condition called Sturge Weber Syndrome. As a result, she has glaucoma in the right eye, no left-side peripheral vision and a birth mark across the right side of her face. These are the more mild symptoms of her condition. Vera had eye surgery when she was four months old and has been wearing glasses to help her vision. We take her every 3 weeks for intensive laser treatments on the birthmark. Because of the injury to the right side of her brain, Vera also suffers from epilepsy.
When she was four months old, Vera started having focal, tonic seizures. Then, when she turned six months old, she started having infantile spasms. If you research infantile spasms, you'll learn that it is known as the most catastrophic of seizure types in children. Our medical team at NYU has been helping us keep the seizures under control so far but as Vera grows and her brain develops, the seizures will make new connections and can return or present in new forms.
While treatment is so helpful, ultimately it doesn't end our fear or struggle. In fact, the medicine that stopped Vera's recent seizures (infantile spasms) has been known to lead to permanent blindness after long-term use. So medicine in the long run is not ideal. What we need is a cure. CURE, Citizens United for Research in Epilepsy, is taking a personal stand against epilepsy and is actively working towards ending this awful condition.
If your employer offers donation matching, please submit your receipt to them to double your gift! Salesforce is matching all donations from Cindy so you can send to us via PayPal or Zelle (firstname.lastname@example.org) and we'll submit your donation for you, then we will request a match from Salesforce. NOTE: if you go this route, we aren't able to provide you with a separate tax receipt for donations made through us.
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