Hi, My Name is Karli

I have Sturge-Webber Syndrome

In the cold month of December 1993, this fireball of life came into the world. doctors were unsure what her life would unfold into as what she was blessed with, turned into something that would halt her from many activities and possibilities to come. She was diagnosed with Sturge-Weber syndrome.

Sturge-Weber syndrome (SWS) is a rare vascular disorder characterized by the association of a facial birthmark called a port-wine birthmark, abnormal blood vessels in the brain, and eye abnormalities such as glaucoma. SWS can be thought of as a spectrum of disease in which individuals may have abnormalities affecting all three of these systems (i.e. brain, skin and eyes), or only two, or only one. Consequently, the specific symptoms and severity of the disorder can vary dramatically from one person to another. Symptoms are usually present at birth (congenital), yet the disorder is not inherited and does not run in families. Some symptoms may not develop until adulthood. SWS is caused by a somatic mutation, most commonly in the GNAQ gene. This mutation occurs randomly (sporadically) for no known reason (Sturge Weber Syndrome - Symptoms, Causes, Treatment | NORD (rarediseases.org))

Imagine coming into a world and no one around could tell quite what was wrong. I can imagine some of you reading this may have a similar story, as there are so many rare diseases we’d love to bring to light through Dragonfly Ranch. Karli went through many stays in the hospital as her seizures would try and stop her from progressing in this world—Karli, a fighter, along with her mom… never let this come true. She has hit many milestones of being seizure free, her longest stride was 8 years!

Life sure is like a box of chocolates with this one, you never know what you’re going to get... sweet, sassy, bold, comfort, amazed, overwhelmed. She loves to learn, as long as you are by her side. But she is learning to overcome that fear, as she knows it is worth overcoming. Every day she tests herself, from taking care of the morning routines with the dogs and ducks... to feeding her niece and singing all the songs she can get Alexa to play. She loves to be a leader, whether you’re 3 or 10 or 59, she’s got your back. Karli is the type who would give you her wishes for her birthday; she’d spend her last future savings on your first car. She loves hard and hugs harder.

She’d love to work with horses one day and to help people like her.